Aidan was diagnosed with mosaic Down syndrome at 2 years old.

 

Meet Aidan

 

Aidan was our first child. We sailed through an uneventful pregnancy and delivery. Everyone commented that he was so beautiful! He had a little trouble nursing, but he was our first and we didn’t know any different. He was such a pleasant baby. We loved being parents to him; he made it seem so easy! He hit all the milestones just fine – walked a little late, but still within average parameters – until he was approaching his second birthday. We couldn’t figure out why his speech wasn’t coming along. He went to an early intervention preschool for a few months, but at his 2-year check-up his doctor was still concerned. After examining his eyes, hands and ears, he told me he wanted to order a test for Down syndrome.

 

I was stunned. I was not expecting that! I went home and told my husband and finally broke down. All the images of my son’s future were now shapeless. All the questions came pouring through my head. And we had to wait 2 weeks for the results?! Needless to say, that was the longest 2 weeks of our lives. We came to a crossroads and eventually decided that whatever the results, we wouldn’t ask for Aidan to have been any different. We had fallen in love with our little boy exactly how he was.

 

I remember the day I got the call from the doctor. You don’t forget a moment like that. I remember exactly where I was, what I was doing, where I sat down when he told me that the results were unexpected. He said my son had a rare form of Down syndrome, called “mosaic”. He explained a lot of other things I didn’t really hear (numbers and percentages mostly) while I processed the information. What I did hear him say next was that he knew very little about mosaic Down syndrome; he gave me a geneticist’s number and wished me luck.

 

After researching on the internet and coming up with very little we were hopeful the geneticist would have more information for us. She explained the genetics of it, but had no answers about his future. She gave us a stack of papers she had printed off the internet, from the same sites we had found and could offer no more help.

 

A few weeks later we found IMDSA and it felt like the future started taking shape again. As we met other parents online through the support group and heard others share their experiences we finally started to understand all the ability in Aidan’s diagnosed “disability.” It has been about 5 years since we found IMDSA and Aidan is doing well, thanks to the many suggestions, tips and support from other parents just like us. We couldn’t be more grateful to all the people who brought IMDSA to life! Thank you IMDSA!