When my youngest daughter, Allison, was born, I had already successfully been through two wonderful experiences of raising my other two daughters through those early precious years. I didn’t expect raising Allison to be any different even though we were living in a foreign country. She was a beautiful baby! No complications during the pregnancy, or at birth. I did notice she stuck her tongue out quite a bit and had difficulty eating at first, but I just ignored it refusing to believe that there could be anything wrong. Although all of your children are different, Allison’s behavior was always just a little different than what my other two had been. She was always slower at learning things and she just didn’t develop like my other two girls did. Didn’t sleep well, didn’t breastfeed well, didn’t crawl like my others, and never made sounds like my others.

But she had a great family that spent a lot of time and love with her and we made it through it. By 10 months we bribed her with a cookie and she crawled. At 15 months we bribed her with a hotdog and she walked. At two years of age, I asked her pediatrician why she wasn’t talking yet. He just explained that in a bilingual household she was confused and it would take more time for her to learn both languages. I wasn’t satisfied with that answer. I knew by now that she definitely wasn’t developing according to schedule. She was such a pleasant baby though, I wasn’t going to complain.

At the age of four, Allison had a vocabulary of maybe twenty-five words. During this year we had moved back to the United States and she had received testing through several different medical establishments, all stating the same thing, she was developing slower than normal but nothing was wrong with her. It wasn’t until she was five years old, and Allison had a family doctor, that the doctor suggested genetic testing be done for the first time. Upon the genetic doctor’s first visual examination he said, “She has mosaic Down syndrome”. I felt so relieved; finally someone had validated my concerns. The doctor did a biopsy and when the test was finished and positive for mosaic Down syndrome; we returned for consultation. Five years of Allison’s life had passed; no one had ever given us a clue that this was a possibility; now we were sitting in front of genetic counselors asking us if we had any questions. We didn’t even know what to ask. Our methods of raising our daughter didn’t change, everything remained the same. There was no one to talk to about mosaic Down syndrome. There was nothing available to read about other than doctor’s research manuals.

It was 7 or 8 years later that by accident one of Allison’s caseworkers stumbled across a website called IMDSA. By this time my daughter was becoming a teenager and I needed help! I couldn’t believe it, other people that understood exactly what I was going through; and knew so much about everything that was going on with my daughter’s syndrome. Whenever I have a question or just need someone to talk to, they are there. Going to a mosaic Down syndrome Conference helped our family understand what MDS is and how to help and understand Allison. It has now been four years since my involvement with International Mosaic Down Syndrome Association and it has changed our lives! Thank you IMDSA!

Mary D’Agostino
IMDSA Treasurer
Mom to Allison