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Jackson's story

Jackson was born sleeping and wouldn’t eat at all. I kept thinking
something was off about him but the doctors and nurses just kept
telling me that he needed more time. Two months later, I had a little
boy who would gain minimal weight but wouldn’t wake up. One day he started to
have vomiting episodes when he would take formula. Another one of our
children had very bad reflux at a young age. So I called our
pediatrician and asked
for the reflux test. He sent us to a wonderful GI Dr. Porter who I
believe saved Jackson’s life. She started him on the reflux diet,
switched his formula, and started meds. However, the next morning at 6
am, I got a phone call that she had been up all night talking to the
doctors across the country about Jackson. In talking to them, she
really felt if we didn’t hospitalize Jackson within 24 hours he would
be gone. Piercing words to hear as a mom, my heart fell. We rushed him
to the hospital and our journey began.
We have been from diagnosis's of
methylmalonic acidemia in 2006 to in 2008, suspected mitochondrial disease.
Jackson’s been through a lot since that day. In his short nine years,
Jackson has had numerous biopsies, hospital stays, ER visits,
surgeries, labs, and doctor visits. Recently
he had brain surgery for a chiari 1 malformation and earlier last year
he was diagnosed with EOE. He suffers from chronic constipation,
reflux, vomiting, behavior issues, trouble with heat and cold, and
gets tired easily.

In spite of all that, Jackson is a happy little boy who just wants to
play baseball and not get exhausted. He wants to spend time at the
park, watch superheroes, and go to school. He loves life and sports.
His dream is to play baseball someday. I hope he gets that dream.

TGEN has been amazing for him and for our whole family. They give us
hope. I believe they
are the hope to finding a cure for mitochondrial disease and to help
all of Jack’s friends who are battling as well.