Thursday, April 11, 2013
7 News Features: Hungry for Life
Imagine having a child who has to be fed every few hours. If not, they could have a seizure, or even die. A child who may never sleep through the night because they have to get up and eat. 7's Robbin Simmons introduces us to children who are Hungry for Life.
WSVN -- For the Gussin Family, feeding their 8-month-old baby is always a race against time. Missing a meal, even by an hour, could literally mean death.
Meredith Gussin: "Food is the only thing that keeps him alive."
Little Jamie must be fed 11 or 12 times a day, which often means forcing him to eat.
Meredith Gussin: "He's always full, so when he throws up, we have to start all over again."
Jamie was born with a rare genetic disorder called Glycogen Storage Disease Type 1a, or simply GSD.
Meredith Gussin: "His liver is missing the essential enzyme that converts glycogen back to glucose, and glucose is the energy that fuels every cell in our body. When your blood sugar gets so low, it can lead to seizure, a coma, and ultimately death."
To maintain normal blood sugar levels, Jamie has to have foods that are high in glucose every couple of hours. One time his parents tried to extend his feeding times, Jamie almost died.
Meredith Gussin: "I noticed he was sweating profusely, and he was hyperventilating. Thank God he was in my arms that night. We really believe we would have woken up to him being dead in the crib."
Sleep is now rare at the Gussin house. The parents take turns testing his blood sugar around the clock.
Father: "It dropped a hundred points in an half hour, which is awfully scary.
Two alarms are always set so they don't miss feedings during the night.
Father: "We can't afford to oversleep."
To make feedings easier, Jamie now has what's called a g-tube.
Father: "We connect this to his g-tube, and we feed him in the middle of the night. A lot of the kids are put on an overnight feed at night, but we have not chosen to do that because of the complications that can occur if the machine breaks down. He could die in the middle of the night and we'll be sleeping peacefully in our bedroom."
And peace of mind is hard to find, especially as the family looks ahead.
Father: "It will never end."
Meredith Gussin: "He'll never grow out of this."
They do have a glimpse into Jamie's future. They've met the Hodes family, who live in Parkland. Their two girls, now 11 and 15 years old, have GSD.
Lisa Hodes: "We haven't slept a night in 15 years. Countless trips to the hospital, we've been through a couple of seizures. It's always, always on your mind. You never, ever stop thinking about it."
Mom and Dad still get up during the night to feed their daughters, and have to put their trust in teachers and school nurses to remind their children to eat during the day. The girls have missed sleepovers with friends, and a restricted diet keeps them from enjoying most foods kids love.
Katie Hodes: "There's a lot of stuff I want to eat, that everybody is like, 'Do you want this?', but it's, like, I can't have it."
But there is hope on the horizon. The disease has been cured in animals, and now both families are frantically trying to raise money to help fund human clinical trials.
Katie Hodes: "I hope there is a cure, because if there is, I can do stuff that my friends can do without having to worry so much about, 'What time is it? What time is it?"
And passing time is what haunts parents the most, a time when they won't be around for a child who will be hungry for life.
Lisa Hodes: "There are so many things to worry about, mostly that they are getting older and they are going to start moving on, and we're not going to be there, and that's frightening. We're starting to look at colleges, I can't even imagine."
Robin Simmons, 7News.
Fewer than 500 people in the U.S. have this disease, so they really need to raise the money to get these human clinical trials going. There is a golf and gala fundraiser next Friday, April 19th, at the Marriott Hotel in Coral Springs.
FOR MORE INFORMATION:
Make a donation to The Children's Fund for GSD Research at www.curegsd.org
GSD fundraising event on April 19th at the Marriott Hotel in Coral Springs.
Information can be found at the same website under "Events."