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!
Monday, June 30, 2008
St. Judes Trike A Thon
"Every day we do get closer to a cure. Three out of
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.
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
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.
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.- 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
- 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
- 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
- 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
- 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.
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). viewer mail...
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."
ver 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.
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
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
crime is abandoning the children, neglecting the fountain of life. Many of the
things we need can wait. The child cannot..."
Mistral
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!
Hi,
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?
Sincerely,
Jacqueline Robertson
Chromo17-President
www.chromo17.com
info@chromo17.com
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.
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...
Hey,
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.
Blessings...
Monday, February 11, 2008
Reaching out to Women in Need
"When women thrive, all of society benefits,
-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 .
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.
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.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.
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
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.
- 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.
Friday, February 1, 2008
Pennies for Patti
The greatness of a nation and its moral progress can be judged by the way it treats its animals. --Mahatma Gandhi
With that in mind, our first donation went to a charity my son chose. Pennies for Patti is a sponsorship program my son's school is participating in. With the help of other families, Their school has sponsored Patti, a hippo at the Milwaukee County Zoo. The children will all have an opportunity to go to the zoo for free and see Patti when warmer weather is upon us.
The Milwaukee County Zoo was an excellent first choice for our family. Their exhibits have provided countless hours of enjoyment, and education for our family! If you haven't been recently you really should go! Opportunities to sponsor an animal or get involved with other Zoo charities can be researched by clicking on the link above. Charity Navigator gives this charity 3 of 4 stars!
I had a heck of a time carrying $31 in pennies but the kids really got a kick out of it!




