Posted by: Hallie Levine | September 19, 2011

The most perfect little girl in the whole world…..

 

…and as her mother, I want to make sure she has the most fulfilling life possible.

On Sunday, October 2nd, the Sklar family will participate in the 6th Romp for Research for Down Syndrome. This event is so important to us that we are schlepping all three kids into the city during afternoon nap time for this momentous occasion.

Why are we doing this? We want to raise money for treatments to improve memory, learning and speech in people with Down Syndrome.

Improve is a key word here. We’re not looking to cure Johanna. We adore her, and while we struggled for a long time with her diagnosis of Down Syndrome, we now ultimately realize that she wouldn’t be the same Johanna we love so much if she didn’t have her extra chromosome.

But we want the best for her, our beloved eldest daughter. Therapies, although wonderful,  can only do so much. Jo Jo’s brain processes things differently than a typical kid’s. I won’t bore you with all the scientific details (and I don’t fully understand them myself) but if you’re interested you can check out the research of William Mobley, MD, PhD, Chair of the Department of Neuroscience at the University of California San Diego, at http://downsyndrome.ucsd.edu/. The man has dedicated his career to research in Down Syndrome. Jamie and I had the privilege of meeting him at a dinner a couple years ago, and his dedication is amazing.

We don’t worry so much about Jo Jo now, but we do worry about her thirty years from now, when the cognitive impairments of Down Syndrome prevent her from living independently and put her at a much higher risk of developing debilitating Alzheimer’s Disease. We love her to much to want to see her suffer from that.

The Down Syndrome Treatment and Research Foundation has a really interesting stat: they point out that since most people with Down Syndrome fall into the mild to moderate range of cognitive impairment, even a 10-20% improvement in cognitive ability would provide them with the ability to live independently, hold a job, and be fully integrated within their communities.

We want the world for our Johanna, and for others with Down Syndrome. So please, donate. All proceeds are tax deductible and go straight to the nonprofit Down Syndrome Treatment and Research Foundation. Here’s the link to my fundraising page:

http://www.firstgiving.com/fundraiser/hallie-levine/newyorkrompforresearch

Thank you for making a difference in the life of our amazing little girl.

Love,

Jo Jo’s mom

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: