Travis’s Story
Many of you already know that Travis was born with a rare liver disease. For those of you who don't it is called Glycogen Storage Disease Type 1B. This is a life threatening disease that causes his body to break down the sugars in food and drink to glycogen and then store them in the liver. The problem is that Trav's liver is missing an enzyme that tells the liver when to dispurse
these sugars if the body needs them. He is the complete opposite of a diabetic. Along with these storage issues Trav's body doesn't produce enough growth hormone for him to grow at a normal rate. So he is on Growth Hormone shots daily and also needs to have a Nupogen shot everyday as well, to help keep him infection free since the infection fighting part of his white blood cells don't work properly. Trav has a G-Tube and needs to get supplemental feeds every 2 hours during the day and is hooked up to a feeding pump over night. He gets a special formula overnight and during the day he gets that same formula mixed with a high amount of cornstarch. Even though he can eat normally, he still needs the tubefeeds to help keep his bloodsugar regulated. The only cure for this is a Liver Transplant. We are currently on the Liver Transplant list at two centers, Lurie's Children's Hospital in Chicago, and University of Nebraska in Omaha. We have also been okayed by our insurance company to have Trav listed at Children's Hospital in Milwaukee, but are not sure if we will complete that process or not. We are able to do a Living Related Transplant and are hoping we can find a donor for him. As Trav gets older it will be harder and harder to find a match for him. Right now he can easily take a full liver from a deceased pediatric donor and a partial liver from an adult living donor. Travis has an older brother, Colin, who was born with the same thing and received a transplant in July of 2011. I (mom) was the donor for Colin. Although Travis is not deathly ill at the moment little things like an infection or the flu could be deadly for him.
