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Help us on our mission of finding a cure for INAD/PLAN:

Jh’mael J.

3 Years Old | Georgia, USA

About This Superstar

Age of Diagnosis
2 years old

Finding A Diagnosis:
It was absolutely horrendous. We were ignored, disregarded, and we were disrespected. When things did get in motion the abundance of testing done in such a short period of time to accommodate the initial disregard of the concerns presented were in my opinion cruel and repetitive. I began to deny the treatment as I saw that with each procedure he was progressively losing skills. After begging for genetic testing we were finally pointed to the right people. My.heart breaks even reliving the process.

How INAD Has Impacted Their Life
The super busy, extra curious, overactive sweet little boy still lives behind his eyes despite his body not being able to get into everything he wants to

Favorite Activities
Singing with mommy
Watching my brother and mom cook
Going to the park and swinging

Favorite Foods
Blueberries 🫐
Mashed potatoes

Favorite Television/Movie Character
The Good Doctor
The Resident
Mael has always been so serious with these shows 😂
Adventure Time
Akili and Me

Favorite Books
Any book my brother Aarin reads me! Him being at reading grade trying to get AR points exposes me to many different adventures on a nightly basis!!

Parent’s Favorite Motto or Expression
With faith any and everything is possible and we got plenty!

What They Would Like the World to Know About Their Experience Living with INAD
This has been the absolute hardest most difficult thing we have ever had to endure. From the many appointments and the progression of this disease with still no cure in sight, it’s been something I’d wish no parent to endure. Through this though my sons and I have continued to know patience and a love we never even knew existed. I’ve seen a sense of protectiveness from my boys when dealing with their littlest brother and how dedicated we all have been in making Jh’maels existence on this cruel earth. We have also found that though we felt alone in this journey there were others living with this disease also who could offer support. Life is tough but it’s not over and Jh’mael is a testament to this everyday. His contagious smile despite it all is enough to get us through the hardest times I believe.

Special Fun Facts
My oldest Jeremi is 15, he is Jh’mael’s personal chef (aside from me of course) Having to change our dishes to be something his body can intake has helped further his love for cooking.
Aarin is Jh’mael’s entertainer. He is 9 and constantly keeps a smile on his little brother’s face from his flips and tricks. He keeps my little baby silly with the many shows he acts out with him.
Noname’Shrieks is our cat. She was a kitten who wandered into our apartment during renovations and took an instant protective feel over Jh’mael. 7 months later she is still here.

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