3 Years Old | Rhode Island, USA
Just days before her second birthday
She was diagnosed via whole genome exome sequencing after many more and more worrisome symptoms, some requiring hospital stays and surgical intervention
In every way possible. She has lost almost all of her words, but can still communicate with us somewhat. She can still crawl but gets very tired. She is fed primarily via GTube due to weakness with chewing.
Spending time with her brother and cousins, being in the water, going for stroller rides outside, patting her dog and cats, and anything sensory.
Chocolate! And yogurt.
Cocomelon’s “Wheels on the Bus”
Any colorful pop-up book!
We are doing our best to give her a (far too) short but very sweet life for the time we have her with us. This disease is absolutely devastating to the child, and all of their family.
Sage has a 5 year old brother who she loves to play with. We have a dog, Maxine, and two cats, Murry and Arwen, who she likes to pet and crawl after. Both of her parents are doctors who are working to bring more recognition of INAD to the medical community.