Supporting Maggie With Early Interventions

“Having Maggie’s genetic testing done was a breeze! Maggie’s diagnosis gave us a few things; first, it answered the question of why she was delayed. It also gave us a starting point. Rather than chasing her medical complications as they arose, we were able to rule out potential problems that commonly occur with her syndrome ahead of time. We were able to find and address some of her health problems earlier and get established with the specialists that we may need to see in the future.

Having a name also allowed us to find… a group of other families. This group has been invaluable for medical advice as her syndrome is very rare and doctors don’t know much about it yet. The group has also given us a place to relate to people going through the same thing.

Lastly, having Maggie’s diagnosis has opened the doors for help and resources. Her diagnosis allows her Early Intervention therapies, allows her to qualify for Social Security and Disability benefits and Medicaid waivers, etc. With her diagnosis in tow, we feel that we can better prepare ourselves and Maggie for the future.

My advice for parents considering genetic testing? Do it. It’s completely painless and may give you the answer you’ve been looking for, as well as open doors for research, potential treatments, and ultimately improving the quality of life for your child.”

Katie, Maggie's mother