Lunch arrives and Jeffrey Ankenmanns eyes light up. Its steamed rice, his favourite, and a muffin.
Jeffrey takes a nibble. Apple-spice, he says approvingly.
Most 14-year-olds wouldnt thank you for a meal like this wheres the burger, where are the fries?
But Jeffrey is just getting used to eating anything. Hes spent most of his life being fed formula every few hours through a G-tube into his stomach. He had no idea what food tasted like, or what it meant to be hungry.
Because of a rare, recessive gene in each of his parents, and the even rarer chance that they should marry and have a child, he was born with methylmalonic acidemia, which means his body cant process some proteins and fats.
This can lead to brain and nerve damage, breathing problems, seizures and strokes. Babies who are not quickly diagnosed and treated often die. And even going a few hours without nourishment can prove fatal.
Jeffrey also didnt know how it feels not to be nauseous.
He was vomiting for years, says his mom Bernadette. His dad, Gary, adds: To him, it was natural. He was used to going through life not being very well.
The Mississauga family is at SickKids for the day for one of Jeffreys biweekly checkups and treatments, following his liver and kidney transplant in January.
I feel fine, says Jeffrey from his bed. I go to school . . . I always feel fine. I skate, I go swimming. Swimmings my favourite.
See the article here:
At SickKids, genetic medicine offers hope for boy with rare condition