JESSE’S STORY

However, Jesse and his older sister Jenna were born with a rare metabolic disorder with the odd name of “Maple Syrup Urine Disorder”. This means that Jesse does not have enzymes in his body to metabolize protein. Therefore he must eat a severely restricted, low-protein diet. Now that Jesse is grown, he needs even less protein for growth; which means a total of 5-7 grams of protein a day. (That’s 2 slices of white bread!) Also, any small illness, stress, or fatigue can cause Jesse’s leucine levels to rise above safe levels. These high levels are toxic to his brain. As a college student, Jesse is juggling school and homework with making his low-protein formula, cooking special foods, and checking in with doctors. Jesse has experienced very high levels at college and the reality of adulthood with MSUD is worrisome.

In July, Jesse underwent an extensive evaluation at the Children’s Hospital of Pittsburgh. This transplant center has performed the majority of the MSUD liver transplants in the US, and was where Jenna received a liver transplant in 2007. Jesse was deemed an excellent candidate for a liver transplant. A new liver would give his body the ability to process protein. Jesse would be able to eat a normal diet and would be free from the threat of brain damage. He was placed on the UNOS list in Pittsburgh on July 25. When “the call” comes, Jesse and parents will need to be there in 6 hours, and are required to live in Pittsburgh for 2 months following transplant.

Now we prayerfully and eagerly anticipate the day that Jesse is cured from his MSUD, and he is excited that now he has the possibility of living an independent life as an adult.

In support for Jesse, I ask for two things:

1. PLEASE PRAY! Right now, we can pray that God is preparing the donor, the medical team, and for Jesse’s health in the months leading up to surgery. Then, of course, for the transplant surgery itself—that the surgery goes well, and there be no threat of infection or rejection. Please also pray for both of us and our other kids—for peace and acceptance while waiting for the call to come from Pittsburgh and during a period of separation from each other. We also pray that Jesse may be able to give the gift of life – by being part of a domino transplant and giving his liver to someone else.

2. Even with health insurance, there are many expenses that will not be covered. To help offset these costs, a fundraising campaign in Jesse’s honor has been established with HelpHOPELive (formerly NTAF), a non-profit 501(c)(3) organization that has been assisting the transplant community for nearly 30 years. All contributions are tax deductible, are held by HelpHOPELive in the Great Lakes Liver Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. If God lays it on your heart to help in a financial way, please write a check to HelpHopeLive and mail it to the address below.A Care Pages account for friends and family to follow Jesse’s transplant process has been set up. Please register at www.carepages.com. His page is found at “jessekiel”. Once we receive “the call”, we will regularly update his page. We treasure your prayers, and wait on God’s timing for this chapter of Jesse’s life.

Thank you in advance for your support—prayers and financial. We can’t do any of this on our own; but we serve an awesome God, who can do far more than we can ever imagine! He has shown us his loving care in so many ways.

Carl & Sandy Kiel