Mosaic Down Syndrome, or MDS, is rare. In fact, of the entire Down Syndrom population, only about 2% are diagnosed as Mosaic. Because of that, there is minimal research and information available to families with a member with MDS. Which is why we are asking for your help. Please prayerfully consider donating to this cause which we hold so dear to our hearts. For our family's experience with MDS, please read below. Also please visit the IMDSA website at http://www.imdsa.org/.

On May 16, 2005, Lucas Ryan Snow was born. He was perfect, beautiful and ours. We knew we loved him while Brandy was pregnant, but the moment we first laid eyes on him, that love grew to a level that neither of us knew was possible. It was completely obvious that we had no idea how much we were capable of loving another person until he came. With each passing day, his amazing personality became evident and ever-present.

Around 7 months old Lucas decided he wasn't hungry...ever. He would take a few bites and fall asleep. It was a challenge to keep him thriving. Dr. William Bondurant in Edmond, OK was his doctor and followed him closely trying to determine the issue. He suggested that we at least enroll him in Oklahoma's early intervention program, SoonerStart. We did and Lucas promptly began Occupational Therapy to increase his fine motor skills and we all worked very hard to strengthen his oral motor skills. Things we new: eating tired him very quickly, he was no longer gaining weight, and his development was slowing. What we didn't know: why?

He did improve after months of therapy, however, Dr. Bondurant still felt that we needed to find the source. After months of urging us to have a blood test done, we finally took Lucas in to have his blood drawn and genetic testing done.

Three agonizing weeks later, Dr. Bondurant's office called to schedule a meeting with us. We were to meet with the doctor himself on Monday. No, they couldn't release any information over the phone, it had to be in person, but "don't worry this was just a legal process they had to follow". It had to have been the longest 3 days of our lives.

Finally, Monday came. Dr. Bondurant seemed somewhat uncomfortable, but still sure of himself as usual. He delievered our diagnosis. Mosaic Down Syndrome. "Mosaic what?" we asked. He gave us a description and sadly, we didn't even know how to process the information.

A few years later, Lucas has received wonderful therapy, lots of love and support and he is now thriving. However, our lives are forever changed and there are things that have to be done every single year (i.e. blood work, therapy weekly, and visits to geneticists and doctors). Our work and Lucas' difficulties will never end. Luckily, he has a strong desire to succeed and do well and we have no doubts he will be just as successful as he wants to be.
 

 

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