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