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Help us on our mission of finding a cure for INAD/PLAN. Jackson’s family is fundraising to help us bring our gene therapy program to a clinical trial:

Jackson S.

9 Years Old | Madison, NC

About This Superstar

Age of Diagnosis
In November 2016, we finally found out what was going on with Jackson. It took a year and half of endless testing, seeing countless doctors all to be told there was no cure and no hope to save our child. Jackson was 3. Needless to say we were completely devastated and still are to this day.

How INAD had Impacted Their Life
This disease has impacted Jackson’s life in every aspect from walking, talking, eating, seeing and just being a child in general. Jackson loves kids and animals but because of this disease he is unable to play with them. He is a prisoner in his own body. Jackson is not able to go to regular school due to his medical fragility so he has homebound schooling. He misses out on everything a typical child experiences at school. Day in and day out he has therapy to keep his body going. This disease is very unfair and unrelenting.

Favorite Activities
Swimming, Swinging in his adaptive swings, Riding his adaptive bike, Singing and Listening to music, Reading, Horseback Riding and Spending time with family

Favorite Foods
When Jackson ate by mouth he really loved everything but he did have a sweet tooth. Now we feed him through his gtube due to him losing his ability to swallow. He eats everything we eat now but we blend it up and syringe through his gtube

Favorite Television/Movie Character
Jackson doesn’t really like tv. I think its not engaging enough for him. He loves human interaction.

Favorite Books
Any type of noise books

Parent’s Favorite Motto or Expression
Never Give Up.

What They Would Like the World to Know About Their Experience Living with INAD
Jackson is such a bright and happy child. He is so full of life and always has a smile on his face. Jackson never complains at what life throws his way. He is one awesome kid!

Special Fun Facts
Jackson is the only child but he does have two fur siblings. Tux the cat and Sawyer the dog. He is especially close to the cat Tux. Tux is a very verbal cat which cracks Jackson up. He follows Jackson everywhere in the house and is super affectionate towards Jackson. Jackson definitely loves all the attention!

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