Trevor's Tournament

Over the weekend, our coed softball team played in a small tournament in Baldwin called Trevor's Tournament. The tournament is in memory of a little boy named Trevor Leeker, who passed away in 2001 at 21 months of age. Trevor died of a hereditary disease of the nervous system called Krabbe Leukodystrophy. This genetic defect disables the production of a particular enzyme in the body which is supposed to break down a particular type of fat. When that fat begins to build up, it begins to destroy the myelin sheath that protects the nerves, which then begin to deteriorate. The affected infant begins to lose motor skills and mental functioning at 3-6 months of age.

Krabbe disease is extremely rare, occurring in only 1 of every 100,000 U.S. births, so not many people have even heard of it. The disease started receiving a little more attention in 1997 when Jim Kelly's son Hunter was diagnosed, and Hunter's Hope was created to spread awareness and raise money for research. Still, even many people in the health care field have never heard of it, which is why the early signs of the disease are often ignored or misdiagnosed. The sad thing is, there is a relatively new treatment for the disease where donor umbilical cord blood is transplanted into the bone marrow of the affected infant, halting or even reversing the nerve damage. This procedure has saved the lives of many children, but the transplant has to be done before the disease manifests itself or when the symptoms are extremely mild. The only way to detect the disease before the symptoms begin to show is through genetic testing, but since doctors don't screen for the mutation except in families with a known history, it usually goes undetected.

So along with building awareness, Hunter's Hope and all the families of "Krabbe's Kids" are pushing for universal newborn screening, in which all infants would automatically be checked for Krabbe disease and other similar genetic defects through a blood test within their first few days of life. Currently, every U.S. state practices newborn screening, but only 2 states have started screening specifically for Krabbe disease. Some states screen for as many as 50 diseases, but our state screens for less than 10!

The great thing about Trevor's Tournament is not only does it promote awareness, but it also raises money for a scholarship fund in Trevor's name, which will be awarded to students in the medical or educational field. As Trevor's dad says, each student who receives this scholarship makes one more doctor, nurse or teacher who is familiar with Krabbes!

I've talked so long about Krabbes, I haven't really talked much about the tournament itself. That will have to wait for another day. Today, the important story is Trevor's.