"We must not, in trying to think about how we can make a big difference,
ignore the small daily difference we can make which, over time, add up to big
differences that we often cannot foresee." - Marian Wright Edelman

Sunday, November 9, 2008

Providing Shelter To Those In Need

'Home is a sanctuary for me

and the place where I can relax.

Everyone should have the right

to a safe and secure home.'

-- Corinne Bailey Rae

The economic and housing crisis is in the forefront of every one's mind. I am no exception. We have elected a new president who has promised to try to turn this around. Barack Obama doesn't take office until January 20, 2009. Individuals without a roof over their heads, clothes on their backs and food in their bellies can't wait until then. For this reason I decided to pool my September and October monies together try to help one homeless family now.

How many people are homeless? In doing some research I have found there is no easy answer to this question. In most cases, homelessness is a temporary circumstance - not a permanent condition. A more appropriate measure of the magnitude of homelessness is the number of people who experience homelessness over time, not the number of homeless people.

Studies of homelessness are complicated by problems of definitions and methods used to collect data. As a result of this and financial constraints, most studies are limited to counting people who are in shelters or on the streets. This approach may provide useful information about the number of people who use services such as shelters and soup kitchens, or who are easy to locate on the street, but it can result in underestimates of homelessness. Many people who lack a stable, permanent residence have few shelter options because shelters are filled to capacity or are unavailable in their area, particularly rural areas, and can go uncounted. These studies also do not take into account the number of individuals who go from family to friends night after night, or who sleep in their cars.

One of the best approximations is from a study done by the National Law Center on Homelessness and Poverty which states that approximately 3.5 million people, 1.35 million of them children, are likely to experience homelessness in a given year .

Therefore by its very nature, homelessness is impossible to measure with 100% accuracy. More important than knowing the precise number of people who experience homelessness is our progress and efforts in ending it.

I did some checking around found an organization in my area called Hebron House of Hospitality. Their mission is to "provide emergency food, shelter, clothing, and support services to people experiencing homelessness and housing emergencies; to work towards finding a solution to end homelessness and to interrupt the cycle of homelessness and poverty whenever possible."

I contact them and explained who I was and what I wanted to do. I was put in contact with Anita Fabos, Development Director. I asked Anita if there were any families staying with them currently who were in need of winter coats this year. I can't imagine what it is like for a parent to not be able to provide their child with a warm coat, hat and mittens on a cold winter day. This is Wisconsin and it can become bitterly cold well before winter even officially arrives. My own children needed new coats this year, and look forward to picking them out and wearing them for the first time. I knew they would identify with this need for another child.

Anita informed me there were 2 families that could use my help. Family one consisted of mom, dad, and a 7 month old son. Family two: a single mom, 10 year old girl, and 4 year old boy. I had already decided to pool my September and October monies together, so I was really hoping for some sales to help me get as many coats, hats, mittens etc.. as possible.

With a little luck and bargain shopping I was able to provide coats, mittens and hats to everyone in family two and the son of family one, and only went $8.18 over my budget! This was really a great feeling. These two families have one less thing to worry about this winter but their problems are far from being solved. This is where Hebron House and you can continue to make a difference.

Winter coats, hats ,mittens and mitten clips for one single mom and her daughter and son.

Winter coat, hat and mittens for a 7 month old boy.

When Hebron House opened it's doors in 1983 they were "the only source of emergency shelter in Waukesha County providing services to people experiencing homelessness who were not necessarily victims of domestic violence." Since it's inception Hebron House has expanded and now has 2 additional shelters: Siena House which like Hebron serves single women and families and Jeremy House Safe Haven which seeks to shelter and provides services to homeless individuals who also suffer from mental illness. After completing some initial paperwork families can stay for up to 3 months and singles for 1 month. Fabos states that they may apply for an extension if needed, provided they are following the rules.

In addition to providing emergency housing, food and personal support, Hebron House of Hospitality provides additional resources necessary to either keep a family in their current home to prevent homelessness or works with other local/national agencies to help secure permanent housing for those who have found themselves homeless. Case management services, a No- Interest Loan Program and budget counseling, housing education services, landlord tenant advocacy, and helping clients expedite SSI paperwork are key services offered which help clients become self sufficient and get out of their housing crisis.

With the help of grants, in 2002 Hebron House purchased two-four unit apartment buildings for permanent housing for persons with co-occurring special needs.

By one estimate, about seventy percent of Americans are living "paycheck to paycheck" and have no money left over after paying basic monthly expenses. This means they are a paycheck or two away from becoming homeless as well, especially if they rent. "The biggest misconception is that homeless individuals are people that are just lazy and don’t want to look for work. However, about 90% of our guests are the working poor, so they all have jobs but can’t make ends meet. The other 10% is the chronic homeless, which means no matter how much help and how many services we provide them they will always end up back in a shelter and homeless," says Fabos. Organizations like Hebron House and it's brother and sister facilities are an essential part of our community. Unfortunately they can not do it alone. They need our help.

Along with 50,849 meals, Hebron House of Hospitality’s three shelters provided 20,567 nights of shelter in 2007. However, because of the shelter being full they had to turn away 1335 singles, and 434 families. Fabos estimates that the number of clients showing up has increased about 20% over last year. This is no suprise with the current economic and housing problems we are facing. "If we have to turn someone away we would try to get them a hotel voucher that we are able to get through another agency in Waukesha. If we can’t get them a hotel voucher then we have a deal with a local church that on really cold or really hot nights we can have individuals go over to the church and stay in their basement," Fabos said.

Want to help Hebron House? There are many ways you can help. One of the easiest ways you can help Hebron House is to designate Hebron House of Hospitality as your Pick and Save, “We Care” recipient. The agency number is 316750. This cost you nothing and will only take 5 minutes of your time. Hebron House was founded and run by volunteers for the first three years of their existence. Please call 262-549-8720 to find out about volunteer opportunities.

Hebron House gladly accepts financial and in-kind donations. They are in constant need of gift cards, linens, clothing, kitchen supplies, and personal hygiene supplies. For a complete list of needs click here on the link, or contact Anita Fabos at 262-549-8720 ext 112. Christmas is coming you can shop online at the large shopping mall, Igive.com, and a percentage of your purchase can be designated to Hebron House. If you are part of a larger organization perhaps holding a food, clothing or toy drive is something you can consider. There are so many ways to reach out and help, please contact Hebron House today to see how you can make a difference!

Wednesday, November 5, 2008

More mail

Rochelle said...
Hello.. We are sorry to her about Lydia's condition and want you to know that she is not alone. Our Lylianah was also diagnosed with deletion 9q34.3 syndrome and we would like to know more about it and get some advice. If you could please contact us or email us at 937-622-1693 or sreier1974@yahoo.com thanks!!
September 1, 2008 7:14 PM
hmalbon said...
I just came across your webpage & wanted to let you know that I too have a child with 9q34.3 Deletion Syndrome ( a 9 year old boy,Tanner). I agree with you that it can be very frustrating as it is so rare , but more info is becoming available & it seems that there may be more cases than we realize , now that the testing is available that is able to detect this disorder , whereas before it went undetected, as it did in my son til he was 7.Please feel free to contact me at any time .
November 1, 2008 10:40 PM
vikky said...
hi my daughter lilly has a very rare condition called 17q21.31 microdeltion syndrome your daughters condition and how it affects her seem very similar to lilly's its so frustrationg having no answers as so rare , no support group, organisation etc for the syndrome and not even a proper name i share your frustration and as the few who share my daughters condition live in usa and im in uk i feel very alone!! www.lillymaesappeal.com
November 5, 2008 1:32 PM

Friday, September 26, 2008

Viewer mail

Shirley Leigh said...
"Great..! kids are really the most valuable resource and it's best hope for the future. I will get back to you very soon."

The Giving Tree

Well, sorry it has taken so long to post this, school is back in session and we have been busier than ever. We have however continued in our current mission of giving. For the month of August we focused again on school needs. Our sons teacher has a tree with Post- It Notes on it in the classroom. On them she has listed items that are needed for the classroom. I took our August money and purchased some of the many needed items on her list: contact paper, photo processing gift cards, glue sticks, stickers and small prizes for the children. Most teachers purchase items like these with their own money. This is such an easy way to get involved, and help out. She also has a list of times when she needs help in the classroom. I have committed to helping out for an hour or so each Tuesday. If you are looking for a way to help asking your child's teacher, principal or PTA is such an easy way to make a difference you can really see!
In a side note I participated in Als Run/Walk on Team Lydia's Lucky Charms. You may remember Lydia from an earlier blog. I was fortunate enough to be able to finally meet her and her family! Our efforts raised $4,296.00! Thanks to everyone who donated and participated. The week prior I participated in the JDRF Walk For a Cure at my local zoo. I walked in support of my niece Gigi! Team Gigi's Wishful Walkers toughed the rain and helped raised money to support research to find a cure and end Juvenile Diabetes!

Friday, August 1, 2008

Giving kids a chance

"Children are the worlds
most valuable resource and
it's best hope for the future." - JFK

Well it's that time of year, and I'm sure you've noticed. Whether you have kids or not it's hard not to notice the rows and rows of school supplies at your local discount stores. When I was a kid I loved this time of year. Getting my new school supplies meant that school was just around the corner! As a parent I now look forward to instilling that same optimism and excitement into my own kids.

For many parents however, this time of year can be nerve-racking. Finding the money to pay for the ever growing list of needed school supplies has many parents wondering just where the money will come from. For parents with multiple children the task can seem almost impossible.

In 1999 The Waukesha BackPack Coalition was formed. It's mission is to bridge that unknown gap for parents. The Waukesha County Backpack Coalition is "committed to providing backpacks and school supplies for financially challenged students of Waukesha County" who are referred to them through various social service organizations through out the community. Rachel Fjellman, Social Services Director for The Salvation Army Waukesha states that in 2007, over 1800 children recieved backpacks and various other supplies through the Coalition.

The Coalition is funded entirely by the community. "We do not receive any grants or public funds," says Fjellman. While the Coalition does have "deals" worked out with a few vendors, the Coalition is reliant upon business, individuals, community groups etc... to do fundraising and collect supplies on their behalf. "Without this fantastic support by the Waukesha community we would not be able to operate this program," says Fjellman.

This month Todd and I took our $62 and purchased school supplies and back packs for 3 kindergarten level children. Plus one additional back pack, pencil box and box of pencils. We obtained a copy of the school supplies list from the Coalition's website and went to work trying to find as many bargains as possible. This was really an easy decision for me to make. Donating to the Coalition meant providing a child with the chance to start the school year right. For me this is fundamental. How can we expect children to succeed when they don't even have the most basic of tools essential to getting the job done.
Now is the time to act and make a difference. If you are interested in making a monetary or in-kind donation please visit the Coalition's website or contact Rachel Fjellman at 262-547-7367 ext 225,or Rachel_Fjellman@usc.salvationarmy.org Fjellman says The Coalition can also use volunteers to sort supplies, assemble backpacks etc.. They are also in need of the following in-kind services: web design, printing, and assembly space. If you think you can help don't hesitate!

Monday, June 30, 2008

UPDATE: Lydia's Lucky Charms

In September I will be participating in Briggs and Al's Run/Walk. This walk raises money for Children's Hospital Milwaukee,. This year I will be walking with Team: Lydia's Lucky Charm. I featured Lydia earlier this year on this site, to read story click here. Since then I have stayed in contact with Lydia and her mom Sally. Lydia and so many other families have come to rely on Children's. I have registered with Team: Lydia's Lucky Charm and will be there Sept 20 to show my support to this great cause. If you would like to be a part of the team and walk with us, click here. Registration is $20. Team register name is Lydias Lucky Charm. Password: lydialu. Where they ask if Lydia is a "Children's Champion", click "no". If you would like to make a donation to Children's via Lydia's Lucky Charm, please click on button in right hand column of this site. Thanks!

St. Judes Trike A Thon

"Every day we do get closer to a cure. Three out of
four children who are
diagnosed with cancer will survive the disease, but
that is not good enough. The
loss of one child to this disease is too much."
- Micheal McCaul

Our June Charity was truly a family affair. For the second year in a row Cole participated in the St. Jude Children's Research Hospital Trike A Thon. Cole raised $60 (from Mom and Dad), and truly had a good time while doing it. That brings his combined total for both years to $250! Unfortunately my camera ran out of batteries before I could snap any photos.
For his age, Cole really had a remarkable understanding about why he was participating. He also now is able to recognize the St. Judes logo anywhere he sees it.
Since starting this campaign at the beginning of the year I have noticed Cole's growing awareness, and interest in charity work and it is just one of the reasons this is continuing to be so worth while.
Trike-A-Thon teaches kids about safety and charity. For more than 20 years, children around the country have helped raise funds for St. Jude Children's Research Hospital simply by learning bicycle and tricycle safety.
Trike-A-Thon is a special program developed for early childhood educators and childcare centers to teach children riding safety tips while helping to continue St. Jude's efforts of eradicating childhood catastrophic diseases.
The program is a week-long activity involving young children, their parents and teachers. Trike-A-Thon introduces key concepts of riding safety, and concludes with a fun-filled event where the participants bring their riding toys from home and show off the skills they have learned. In addition to learning how to stay safe, the children also learn about helping others through gaining sponsorships from friends and family for St. Jude.
Trike-A-Thons are held throughout the year, but reaches its peak during the Week of the Young Child, which is April 13 – 19, 2008. Cole's Trike A Thon was held Friday June 6.
Established in 1971, the Week of the Young Child is an annual celebration focusing public attention on the needs of young children and their families and the early childhood programs and services that meet those needs. The program is sponsored by the National Association for the Education of Young Children (NAEYC), the world's largest early childhood education association. Over 8,600 preschools and daycare centers across America participate in the Trike-A-Thon program. Their efforts contribute more than $7.7 million to St. Jude every year.
“St. Jude Trike-A-Thons are a remarkable learning experience for young children,” said David L. McKee, chief operating officer of ALSAC, the fundraising organization for St. Jude Children’s Research Hospital. “The program is a wonderful way to teach bike safety, while also instilling in children the important lesson of helping others.”
For more information about coordinating or participating in the Trike-A-Thon program, please call1-800-626-BIKE (2453) or visit the Trike-A-Thon Web site.

Sunday, June 8, 2008

The Joy of Giving

"A little rain can straighten a flower. A little love can change a
life" - Max Lucado

For the month of May the charity I chose was an organization located in Minnesota called Cheerful Givers. Their vision is simple: "All parents living in poverty will be able to give their child a birthday gift." Their mission: "We provide toy-filled birthday gift bags to food shelves and shelters so that parents living in poverty can give their child a birthday gift. We believe this simple gesture boosts self-esteem, enhances self-worth, and strengthens bonds in families." After reading this I knew I had to be a part of this. I contacted the President Karen Kitchel, who has been with the organization since 1996, full time since 2003, and asked "How can I help? What can I do here in Wisconsin?" And so the idea was born. I would hold a fundraiser, put together my own bags, and on behalf of Cheerful Givers I would donate the bags to a local shelter in my area.

The organization requires each bag have a minimum of $10 worth of merchandise and one "lasting item" such as a book or stuffed animal. According to Karen the typical child who receives a bag is 3-12 years old who is either living in a shelter or whose parents must rely on food shelves. Many of these families are single parent- usually mothers who have several children. Kitchel says, "We don't get to see the kids but from the feedback we get, many of these kids don't own toys (or very few). Many have never owned a book, and some don't know they have birthdays because it has never been celebrated."
I couldn't imagine what it must feel like for a parent to not be able to provide the basics for your children, let alone a birthday gift. I knew this was opportunity for not only me, but many others to get involved in. I set a goal of 50 bags and created a flyer. I emailed, called, mailed and spoke to as many people as I could. The response was overwhelming! I really hit the streets and Internet hard and found some amazing deals. With the money I raised we were able to put together 94 bags! These bags will go the Milwaukee Rescue Mission Joy House.

Boys bags contained:

  • Book, Driving Buddies, based on the kids movie "Cars"
  • Die cast car, character from the movie "Cars"
  • An army parachute man
  • 2 army airplane gliders
  • A package of Jelly Bellies or Willy Wonka Fun Dip
  • 1 coloring book
  • 1 box of crayons
  • Several sports themed temporary tattoos
We also had dinosaur themed boy bags which contained:

  • Book, Dinosaur Detective
  • Dinosaur puzzle
  • Willy Wonka Fun Dip candy
  • Foam Dinosaur mask
  • 2 Dinosaur self inking stamps
  • 8 Dinosaur stickers
  • 1 coloring book
  • 1 box of crayons
We had several different girl bags most Disney Princess themed which included:
  • Book: Beauties in Bloom
  • 1 princess wand
  • 1 princess tiara
  • several girly themed temporary tattoos
  • several glittery, flowery jelly bracelets or a package containing princess rings and self stick earrings
  • 1 coloring book
  • box of crayons
  • package of Jelly Bellies or Willy Wonka Fun Dip
We had 5 bags containing:

  • Clifford the Big Red Dog book
  • Matching Clifford Stuffed animal, with dog house
  • Bubbles
  • 3 flower shaped suckers
  • 1 Disney Magic coloring book with special "magic" marker
  • Glow in the dark light sticks
  • Jelly Bracelets
  • Girl themed temporary tattoos
  • Package containing princess rings and self stick earrings
Lastly we had someone donate 4 beautiful felt gift bags with felt flowers and ribbons on them which included:

  • A large plush flower with bendable plush stem
  • Lady Bug/Butterfly tic tac toe boards
  • Package of neon colored mini gel pens
  • Pastel ribbon lined headbands
  • Small tin of raspberry scented lip gloss
  • Sequin and hearts hair tie
  • 3 containers of play-dough
  • bubbles
  • candy
  • Package of self stick earrings and play rings
  • Jelly Bracelets

Putting together these bags was so much fun! I got the kids involved and we made an afternoon of it! If you are looking for a charity to get involved with your kids I would highly recommend this one. Kids identify with the idea of a birthday present for another child. My kids were excited to help provide for other children, especially when they knew these children didn't have much to begin with.

Cheerful Givers was founded by Robin Maynard in 1994. The story of how one woman was inspired to make a difference is truly inspiring itself. In 1994 just 700 bags were filled and distributed. Fast forward to 2008 and Cheerful Givers has reached 253,000 bags and counting. "Those little bags send a powerful message to kids in a time of need. They say that even though these kids are staying at a shelter, they are still special and deserve to celebrate their birthdays," Mary Ajax President and CEO Community Action Council.

Currently Cheerful Givers operates in Minnesota, and as of 2005 there is a pilot program in Washington, serving the Seattle area. "We would love to extend to every state, country and nation. Difficult part is we need staff and funding to do that. We encourage people everywhere to fill bags and take them to food shelves/shelters," says Kitchel.

There are many ways to become a Cheerful Giver and provide support. Cheerful Givers gladly accepts cash donations, as well in-kind donations. But there are other ways to get involved that are not monetary. Cheerful givers is looking for volunteers to fill many vital roles such as assistant to the president, Blog & Newsletter Assistant Writer, Grant Researchers, individuals willing to contact companies and seek donations, etc... Click on any of the above links to learn more about how you can get involved. If you enjoy reading, New Heaven Publishing will donate a percentage of the proceeds to Cheerful Givers from the sale of the following books: Do I have a Birthday Too? The Cheerful Givers Story by Melanie Bower (also available through Barnes and Noble Bookstore) and I Thirst: Mother Teresa and the Journey of Unconditional Faith by Robin Maynard Steele (founder).

On behalf of Cheerful Givers, and my family, I would like to extend to all 27 donors a heart felt thanks for helping make this project such a huge success. Todd and I decided we are going to hold another fundraiser on behalf of this charity next year. We have several ideas on coporate sponsorship and hope to make next years drive an even bigger success!

viewer mail...

www.cheerfulgivers.org said...
Thanks for your wonderful article about Cheerful Givers and more importantly for the time and effort you have put into supporting our mission.You haven't waited for the world to change, you're changing it!
Karen Kitchel
Cheerful Givers

Monday, May 12, 2008

More mail

daniel said...
Hi, there; I just thought I'd say "thanks" for writing about Aicardi Syndrome, but more importantly, sharing your journey of giving. Our almost-one-year-old daughter, Evelyn, has Aicardi Syndrome, and the connections that we've made with other families touched by AS have been invaluable, both in finding information, but also to find understanding shoulders to lean on. The Aicardi Syndrome Foundation is a great facilitator of that. It really does make a huge difference.You can read more about Evelyn on her blog, http://blog.evelynsarmy.org/. :-)Regards,Daniel

Friday, April 25, 2008

Serena: An Aicardi Angel

"One thing about Serena is she teaches us so much about unconditional love, patience, trust, and contentment. Her will to survive is so strong and she has a very powerful effect on so many that meet her. I am always amazed by that. She is someone who cannot speak but profoundly touches so many. She is just a sweet, content, lovable person. And this, I hope makes all who meet her the same."

For the last two years my husband and I have attended the "Aicardi Party." What's that, your asking? It is a chance to help out a well deserving, underfunded, little known charity for girls suffering from Aicardi Syndrome. One of those girls is Serena, she is the niece of a friend. It is difficult to say for certain how many girls suffer from Aicardi Syndrome, but it appears Serena is one of only 300 to possibly 500 girls in the world. The Aicardi Party was a beer and wine tasting event, coupled with silent and live auctions from which all the proceeds went directly to the Aicardi Syndrome Foundation. This year we combined our charity money for April and purchased 2 tickets to the event.

What is Aicardi Syndrome? After reading some literature and talking to Serena's mother Linda, I have learned that Aicardi Syndrome is a complicated genetic neurological syndrome, with a whole host of symptoms. The most prominent being uncontrollable seizures. Most of us have heard of epilepsy, but unlike epileptic seizures which can usually be controlled with medications, ketogenic diet or a vagal nerve stimulator, seizures from this disorder cannot usually be controlled, ever. Serena has tried all of these without success. Which has left her to deal with uncontrollable, and many times violent seizures. The cause of these seizures: a partial or total absence of the corpus collosum. This is the part of the brain which sits between the right and left sides of the brain and allows the right side to communicate with the left. The seizures, says Linda, are the most difficult part to deal with. Serena can have anywhere from 1-5 seizures a day, which Linda describes as "slight in intensity", when she is not sick. These usually do not require medical intervention. Some, says her mother, may be unnoticeable to an untrained eye. However, when Serena is sick with an infection, shunt failure etc..., she can have at least 10 a day. These are "very obvious, and require some intervention," says Linda.

Serena mom says the other most difficult thing with this syndrome is the lack of speech or any real communication. While Serena does smile, moan and look for her parents in a room when she hears their voice, she has no speech, sign language, or gesturing capabilities. She also is blind in her right eye. "It's so hard guessing what she needs--- does she have an itch, is she thirsty, uncomfortable, sick, hungry, have a headache, etc.. It must be extremely frustrating for her although she doesn't show it."

Other "markers" used to diagnose the disease are lesions or "lacunae" of the retina of the eye that are very specific to this disorder, and other types of defects of the brain such as microcephaly, (small brain); enlarged ventricles; or porencephalic cysts (a gap in the brain where there should be healthy brain tissue). There are a whole host of possible symptoms, from the literature available as many as 40 or more. Additionally AS only affects girls (XY) and boys with an extra X chromosome (XXY instead of XY). Boys with AS who only have the usual XY set of chromosomes will not survive in the womb, and abort.

For Serena's family this long journey began 14 years ago, before Serena was even born. An ultrasound when her mother was 8 months pregnant showed "spots" on her brain. These spots ended up being benign (non-cancerous) cysts, or missing brain matter where her corpus collosum should have been. Serena's mother said other than having a smaller right eye, known as microthalmia- which is common in AS, she appeared normal at birth. However, since they knew something was not right with her brain she went directly to Children's Hospital when discharged. After 4 days, dozens of tests, and doctor after doctor it was determined Serena had Aicardi Syndrome. "We were devastated," said Linda.

Fast forward. Multiple hospitalizations, surgeries, over 40 days in ICU, and over 12 brain surgeries Serena is now 14. She has had the right frontal lobe of her brain removed to try to control her seizures, which was ineffective and ultimately lead to removal of the entire right side of her brain. This has left her with panhypopituitarism (deficiency of pituitary hormone) and a whole other set of problems unrelated to AS. She has had a shunt placed in her brain to help drain fluid, and a G-tube, a tube that leads from the outside of your stomach to the gastric portion of your stomach through which liquid feedings are given. For now this G-tube is only used when Serena is ill and not taking oral foods and liquids. With help, she is able to drink from a sippy cup using her right arm and hand.

Serena requires 24 hour care. Her parents must do everything for her, including waking in the night to check on her and change her. During the week she attends a special needs program at a local high school. The children in attendance are all similar to Serena in health needs. The program relies on a core group of teachers and staff, which according to Linda, have been with Serena since about age 5. Students from the high school volunteer, and are present throughout the day to assist the staff with the kids. She also attends Children's Hospital day care one day a week and during summer. Serena's parents had respite care for a while, but do not any longer. Children's Service Society has never replaced her respite caregiver and have told Serena's parents the waiting list is " too long." Which is what Linda states all the agencies tell them.

Serena does not qualify for therapy, since guidelines require she show "marked improvement." Therefore, to maintain Serena's current range of motion, her parents must do stretching exercises with her daily. Since Serena has very limited mobility,Linda and Terry, Serena's father must move her joints for her. Without these exercises Serena's joints may develop contractures.

Currently Serena does not have a lift for her home. Her parents must lift her from place to place. This difficulty in moving Serena, and her multiple medical issues makes it difficult to find a sitter. Linda says that is the main thing she hears from other families as well. "People could volunteer to be Respite Providers and give the families some relief and time to get away as a couple. I am sure it is a scary thought caring for kids with many health issues. We made sure our Augustine (Serena's former respite care-giver)was comfortable and explained everything over time. She really had no issues, even with Serena at her worst point."

There is no cure for AS. Only symptomatic treatment, seizure management, and attempts to manage the other symptoms, as well as intervention for developmental delays. Some girls with AS can eventually learn to speak. Their prognosis and capability is varied based on the extent of brain damage and other symptoms. With so few known to be affected, research and funding is limited. Currently there are, I believe, two studies being done, and a few groups out there for families to turn to for support.

One such group is the Aicardi Sydrome Foundation. Founded by parents of a daughter born with AS, ASF has helped connect families around the world whose daughters are affected, and also provide financial assistance to cover things insurance will not. Over the years ASF has paid for a handicap shower for Serena and most recently a hydraulic lift on their van. The Foundation also pays for a hotel room and meals for a weekend biannual conference. Doctors, researchers, speakers, trust lawyers, wheelchair reps, etc.. attend and speak about new findings, and to give these families the information they need. Serena's mother says these conferences are extremely informative and a bonding experience for the families.

ASF is run solely by volunteers, including the lawyer and accountant. When a family requests money it is reviewed by the board of directors - again all volunteers. The request must be for something specific, not just "money." The family must provide quotes and a letter from insurance stating the item requested will not be covered.
ASF raises money through a variety of fundraising activities such as golf outings, wine/beer tasting events, auctions, private parties sponsored by families, and even through the sale of Aicardi Angel jewelry. Additionally a group known as The Shrinking Violets has agreed to donate half of it's sales from it's newest CD release "Fragile" to ASF. This year's Wine and Beer Tasting Aicardi Party(also featuring a silent and live auction), which we attended raised close to $30k even after expenses. All the money raised by Serena's parents at the Aicardi Party went directly to ASF. Over the years through various charitable endeavors Linda, Terry, and Serena have raised over $200,000 for ASF. But this is not enough, we need more people to get involved!

For more information on ASF, to make a donation, volunteer, or find out how you can get involved contact: Al and Cindy Meo, Aicardi Syndrome Foundation, P.O. Box 3202, St. Charles, IL 60174 ,U.S.A ,1-800-374-8518. or go to http://www.aicardisydrome.org/. There may be an Aicardi Event coming up near you! To purchase or learn more about Aicardi Angel Jewelry or the CD "Fragile" click on the links above.

Pajama Program Drive Update

A few of the kids from my son's class who
participated in the Pajama Time Drive

Thanks to the generosity of the parents at my children's school, on behalf of the Pajama Program I am able to donate 37 pairs of brand new pajamas (most of which were 3 piece sets) and 12 new books to the Joy House in Milwaukee. So many of the homeless children there have little to no possessions. Like I said my husband used his February money, $28, to create a flyer to distribute at the school. From that flyer we were able to collect over $500 in merchandise!

My oldest sons showcasing some of the goods!

Monday, April 14, 2008

More mail!

Thank you for writing about our Lydia and educating others about Rare chromosome disorders and the unique organizations that help parents out.- Sally (Lydia's mom)

Monday, March 31, 2008

Lydia's Story

“We are guilty of many errors and many faults but our worst
crime is abandoning the children, neglecting the fountain of life. Many of the
things we need can wait. The child cannot..."

9q34.3. You've probably never heard of 9q34.3, and unfortunately for Lydia and what appears to be approximately only 50 other children in the entire WORLD you won't ever hear about it again. 9q34.3 is a rare chromosome abnormality in which a part of one of Lydia's 9th chromosome has been deleted.

What exactly does this mean? For Lydia it may mean she will most likely be mild to severely retarded. She has low muscle tone and requires physical therapy several times a week as well as requiring speech therapy. Despite this, Lydia may never walk or talk. She is at high risk for infection and seizures. She has already faced 3 bouts of pneumonia, one which required hospitalization. She has also been hospitalized for a kidney infection, and most recently after becoming ill and having severe bouts of vomiting,which at times left her unconscious for almost a minute. She is now facing the possibility of having a feeding tube placed. The feeding tube will prevent the recurrent lung infections she has incurred from liquids aspirating into her lungs during feedings. Lydia was born with a heart defect, natal teeth and could still face growth retardation, lung problems and a whole other list of problems. This April Lydia will celebrate her first year of life.
Most likely you've heard of Down's Syndrome. For families with Down's there are many organizations for parents to reach out to for support. Fundraising is happening continually and there is a wealth of information out there for families and supporters. For Lydias family, support in the medical and public communities is almost non-existent. For Lydia's family, the 50 other families facing this rare syndrome, and other chromosome disorders like
9q34.3 it can be a lonely journey with very few places to turn to for support or answers. Additionally funding for research into 9q34.3 is almost non-existent, and programs to benefit the families of children with 9q34.3 and other rare chromosome disorders is even less.
This month I am donating my money to Chromosome Deletion Outreach. CDO provides family matching (3 different networking programs), an electronic newsletter (those without e-mail are provided with a mailed version), listserv, library access to a medical advisory board and website family sharing pages. In 2007 they introduced a mathematical algorithm through their new web application -what they believe is to be the first of its kind - to finally accurately track karyotypes, learn more about the genes affected by these rare chromosome rearrangements and hopefully develop effective treatments.
The CDO relies entirely on donations and almost all administration and management are done on a volunteer basis. Unfortunately for the CDO there is so little information out there about rare chromosome disorders and their organization that the majority of donations come from the families of these children. Families who themselves are struggling with thousand of dollars in medical bills.
Lydia's family has found that the CDO and another organization out of Europe, Unique have been a life saver. Putting Lydia's mom in contact with other families, providing up to date information, and making the journey a little less lonely. For more information about 9q34.3, other rare chromosome disorders, the CDO, Unique or how you can help click on any of the links above.

You may also support Chromosome Deletion Outreach's many family programs and services through the purchase of this beautiful Swarovski crystal & pearl bracelet designed by Kelly's Pearls of Hope. Each bracelet is accented with sterling silver and a unique CDO charm.
For more info please click on the bracelet link. Bracelets come in S,M,L and special sizing by request.

Viewer mail

Here are a couple letters I recieved recently. This type of response makes it even more worth while!

I learned about your blog through the Chromosome Deletion Outreach online support group. I just wanted to say I think what you're doing is so great! Sometimes it seems like there are so many organizations, charities and people in need, it's hard to know who to help or where to start. This way you are able to help many of them as well as learn about them with your family and raise awareness. You've really inspired me to start doing something like this.And thank you for supporting CDO, it (along with Unique) have been such a great support for me. I have a 20 month old daughter with a chromosome disorder. Because her disorder is so rare and each case so unique the doctor's haven't been able to tell us how this will affect her. At least this way we can be in contact with other families to learn about what we 'might' have to expect, have a place to talk about our concerns or just vent!, and to share our stories and inspire one another.

All the best,
S.K. (name has been withheld to protect privacy)

Wow!!! Lydias story brought me to tears....mainly because I know exactly where she is coming from! Our son Jacob was diagnosed with 17q21.31 deletion syndrome which like Lydia is very rare. As of now there are 25 reported cases worldwide, and VERY little information about it. But, through CDO and Unique I have been able to contact other families and share our experiences. Through those groups, other families of Chromosome 17 disorders, and my son I was inspired to begin a online support group for families of Chromosome 17 disorders through Yahoo. Members started flowing in slowly but surely. Now we have www.chromo17.com , which is in the process of becoming a non-profit organization. We are working extremely hard on chromo17 but it is not yet complete, but you are more than welcome to drop by and read our family stories. You'll notice my son on the top left hand side.

I could go on and on but Lydias story said it all...and I agree 110%. It is not only hard finding out that your child has a disorder, but it extremely hard when there is little to no information about it. The majority of rare chromosome disorders do not know what to look for in the future, we just take it day by day, and treat the symptoms as they come along.

I am making a difference by creating a place for chromosome 17 families to find information and support, which costs time and money. In closing I would like to ask that you go to these wonderful groups and read the family stories, and do whatever you can to help support these wonderful groups, every penny helps. If you can't afford to make a donation but have access to the internet then you can raise money for CDO by searching online please go to www.goodsearch.com , enter the charity Chromosome Deletion Outreach, then click verify and start searching and/or shopping!! It's that easy! Everytime you search or shop goodsearch will donate money to CDO. These groups are important to us parents in so many ways, they give us knowledge, hope, and so much more. What can you do to make a difference?

Jacqueline Robertson

Monday, March 10, 2008

The Pajama Program

Every night Todd and I help the kids get their pajamas on, tuck them into bed and read them a story. It's one of our favorite times of the day. When I heard about The Pajama Program, I immediately knew I wanted to make a donation, but I felt like I wanted to do more than just that.

The Pajama Program was founded in 2001. It's mission is to deliver new pajamas and books to the most neediest of children around the world. These are the children in shelters, group homes, foster care, and other temporary living quarters while they await adoption. Many of these children have been neglected, abused and/or abandoned. Some of these children have never owned a pair of pajamas or a book before.

It was with this in mind that Todd and I decided we were going to have a drive for The Pajama Program. We put together a flyer. Todd used his February money to pay for the flyers in hopes that by creating the flyers we could turn his money into much more to help these children. Our kids school graciously agreed to allow us to have the drive there, and to circulate the flyers to all the parents. The drive is scheduled to be held the week of March 24. In honor of the program the staff and the kids are being encouraged to wear their PJ's on March 25.

For more information about The Pajama Program, how you can help, or hosting a Pajama Drive click on the link above. Anyone who would like to donate items in our drive my contact me a honeybee03@wi.rr.com.

Friday, March 7, 2008

An update on Patti the Hippo

With our help the kids school raised enough money to sponsor Patti the hippo at the Milwaukee County Zoo. For our contribution of $31 in pennies the school gave the stuffed Patti the hippo to Cole and Gavin as well as the I sponsored an animal decal. The schools name will be placed on the All in the Family Donor board for 12 months. The children will also be invited to a sponsor's only "Animal Safari" event at the zoo where they will be given behind the scenes tours.
We also were given a little more info on Patti, her mate Pinky and their "baby" Puddles. The kids are really looking forward to seeing Patti as soon as weather permits.

Tuesday, March 4, 2008

Family reaching out to family

Here is a recent email I recieved...

Just thought I'd let you know what we are doing with our 'change for change'. We are pooling our family change and a bit more for my brother, Mike, who got laid off about a month or two back. (shortly after Christmas) We are taking it to my dad to pass off to him tomorrow. This way, Mike can't refuse 'cuz he won't know who it's from! Thanks for your idea.

Monday, February 11, 2008

Reaching out to Women in Need

The new Women's Center located in downtown Waukesha

"When women thrive, all of society benefits,
and succeeding generations are given a better start in life."
-Kofi Annan

Our second choice for January was The Women's Center. A local safe haven for women and their families throughout Southeastern Wisconsin. Since 1977 their mission has been to "provide safety and support to women and their families and to facilitate their development." With Todd's $31, and some bargain shopping I was able to purchase $52.00 worth of food for just $31.00! The items donated came directly from The Center's pantry wish list .

4 million American women experience a serious assault by a partner during an average 12-month period.

Through ongoing support from the community and other organizations like The United Way, The Women's Center is able to provide free and comprehensive services designed to address the issues of domestic violence, sexual assault and abuse. The center is able to provide a full spectrum of services to women and their families in need. Events & Communicatons Coordinator, Amanda Hunter says one of the biggest misconceptions about the women that who use their services is that they are all of the same class and social status. "Women of all races, ethnicities and classes utilize our services," says Hunter.

1 out of 3 women around the world has been beaten, coerced into sex or otherwise abused during her lifetime.

Sister House Shelter-provides safe, short-term housing and support to women and their children who are in imminent danger of domestic abuse. Domestic abuse and sexual assault counseling is available to women and children survivors of domestic abuse and sexual assault. Transitional living provides safe, affordable housing and support services to women and their children while they make the transition from an abusive environment to independent living.

Seventy-four percent of all murder-suicides involved an intimate partner(spouse, common-law spouse, ex-spouse, or boyfriend/girlfriend). Of these, 96 percent were females killed by their intimate partners.

Legal advocates help victims of abuse or harassment file temporary restraining orders and injunctions and also offer support to victims at court hearings. The Women's Center's community educator speaks to small and large groups in the community about domestic violence, sexual assault and abuse. A 24-hour Crisis Line staff at The Women's Center answer questions and offer support 24 hours a day, seven days a week.

On the average, more than three women are murdered by their husbands or boyfriends every day.

Employment counseling workshops and counseling are available to help men and women obtain or retain employment. The Family Support Project offers a variety of services designed to teach families positive ways to deal with stress, manage behavior, and communicate effectively. Emergency respite and onsite childcare provides parents and caregivers a break during stressful times or emergencies by using licensed daycare centers and foster-care homes.

1 in 5 female high school students reports being physically and/or sexually abused by a dating partner. Abused girls are significantly more likely to get involved in other risky behaviors. They are 4 to 6 times more likely to get pregnant and 8 to 9 times more likely to have tried to commit suicide.

TWC is making a difference one woman at a time, but they need our continued support. "The most beneficial thing the community can do to help is to donate funds. However if this is not possible, The Center is very grateful for donated goods (in kind donations) and volunteers, who help with various duties that make it possible for our organization to succeed," states Hunter. The Centers biggest fundraising event, the Anniversary Luncheon, is getting ready to take place April 25. For information on participation or on how you can help support the women and their families who so desparately need these services please contact TWC of Waukesha at 262-547-4600, or click on the link above. By email mail@twcwaukehsa.org . If you live in Southeastern Wisconsin and you are in need of help contact the Crisis Line at 262-542-3828 there is someone available to help you 24 hours a day.

Friday, February 8, 2008

JDRF: Helping Gigi Find a Cure


"If we don't stand up for children, then we don't stand for
much."-Marian Wright Edelman

Could you tell this 3 year old little girl you need to prick her finger for blood 6 times a day, plus a few in the middle of the night? Could you tell her you need to give her a minimum of 3-4 insulin shots a day? That is exactly what her parents must do. Gigi was diagnosed with juvenile diabetes when she was 22 months old. For kids like Gigi and her parents, juvenile diabetes means preparation and planning. Gigi can not be left with anyone that has not had comprehensive training on how to care for a child with juvenile diabetes.

Type 1 diabetes (which includes juvenile diabetes) is a chronic disease in which the body's own defenses (their immune system) attack the cells in the pancreas responsible for making insulin. Without insulin your body can not properly respond to blood glucose, a simple sugar your body uses to make energy. The glucose in the blood comes from the foods that we eat. Some foods contain higher amounts than others. People with diabetes must constantly monitor the amount of glucose they have in their blood. Too much, hyperglycemia, or too little, hypoglycemia, can lead to an emergency situation including coma and death. Parents of children with diabetes must be well educated about the disease and carefully monitor their children for symptoms.

As a child with juvenile diabetes, and as an adult Gigi may face many complications as a result of the disease. These include, but are not limited to:
  • cardiovascular disease in its many forms (heart attack is the major cause of death in persons with diabetes)
  • hypoglycemia which can lead to coma or even death
  • nephropathy (It is a slow deterioration of the kidneys and kidney function.) which is the most common complication
  • nerve damage which can result in numbness, tingling, and constant pain
  • eye/vision disorders including blindness
  • foot and leg ulcers which may result in amputation

Gigi's parents cite the wonderful care they've received at Children's Hospital, and the great support of family in helping her stay complication free thus far. Gigi thankfully is as happy as any other 3 year old. As many as 3 million Americans may have type 1 diabetes. Each year over 15,000 children are diagnosed with diabetes in the U.S. That's more than 40 children each and every day.

The costs of diabetes are staggering. The American Diabetes Association estimates diabetes costs this nation over $130 billion dollars a year. Currently there is no cure for diabetes. Gigi's parents however, as well as JDRF and many other reputable organizations believe Gigi will see a cure in her lifetime! The key to realizing this cure is through contribution.

This month I am making a donation in honor of Gigi to the Juvenile Diabetes Research Foundation. JDRF is the leading charitable foundation and advocate of type 1 diabetes research worldwide. More than 85% of donations go directly to funding research. Their mission is to find a cure for diabetes and it's complications through the support of research. Charity Navigator gives JDRF 4 of 4 stars! JDRF also includes links on their site showing ways you can help without spending any money. The Advocacy Tool Kit is one such way. This kit will tell you how to contact Congress to lobby for more government sponsored research etc... Walk for a Cure , Ride to Cure are just a few more ways you can be part of the cure. JDRF local chapters are also always appreciative of volunteers.
For more information on diabetes, it's complications or about the many ways you can get involved and help bring about a cure visit the JDRF website or by clicking on any of the links above.