Sharickah is a mito mom and a fierce fighter and advocate for her son.
EPISODE HIGHLIGHTS
Can you share with us what your son’s diagnosis journey has been like?
My 8-year-old son was diagnosed at 6 days old with very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency. At the end of my pregnancy, my doctor noticed a depletion of fluids and I was scheduled for an emergency c-section because that could be an indication of distress. After being born, my son struggled with maintaining his body temperature and blood sugar, which were the first signs of something being not quite right. As first time parents, looking to the doctors who didn’t seem concerned, we took him home from the hospital as planned. The next day, we received a call from the genetics clinic to let us know that VLCAD was flagged on the newborn screening. We went straight to the hospital and treatment began right away. The first couple of years were tough and illness led to hospital stays numerous times.
What are your son’s limitations now that he’s older?
The main two things are the fat restriction and energy output. He’s up to 14 grams a fat, which is great, but it’s still limiting. Now that he’s older, and knows how to read food labels, he’s gotten more vocal about what he wants to eat and he’s navigating his own feelings about his limitations. Energy output is key because he wants to play sports, play at recess and be active at P.E. and sometimes he pushes a bit too hard and overdoes it.
How do you navigate school and rare disease?
My son doesn’t want his friends to know that he has VLCAD. You can’t look at him and tell that anything is wrong, so it never occurred to us to have a conversation with his peers. Of course, we had a conversation with school staff. One day when he came home from school, he was telling me that a classmate asked him why he couldn’t have chocolate milk at lunch like them and he told them he didn’t want to talk about it. I’m trying to let him lead how we navigate this. As of now, none of his friends know and it seems like he wants to keep it that way. I think when the time is right and he’s ready to share that part of himself, he will.
