My grandson Evan is now 14 months old. Evan was born with a very rare metabolic disorder called Maple Syrup Urine Disease. Basically, his body cannot metabolize protein the right way. The protein breaks down into toxins that can damage his brain if not treated correctly. When Evan was a newborn we did not know this was happening and my daughter Kelly, her Husband Matt and their 5 year old daughter
Elizabeth almost had to say goodbye as quickly as they said hello. Evan was just 7 days old when he was transferred by life-flight to the Neonatal Intensive care unit at UIC in Chicago and underwent treatment. Evan has been faced with many challenges throughout his short life. He’s had 3 surgeries, 5 hospital admissions, countless illnesses, physical therapy, feeding therapy, and several doctor appointments every month. Through all this he has been able to stay on track developmentally. Evan's diet is made up of a special medical formula and a limited amount of fruit and a few types of vegetables. Recently, he was sick with a stomach virus and because he was unable to keep the formula down he had to be admitted to the hospital. His liver wasn’t working well and his immune system was compromised. It took Evan over a week before he could tolerate his formula and several weeks after that before he was completely recovered from that illness. I created this page because Evan is in need of a liver transplant. A new liver for Evan means a new beginning and a new life. A new liver is essentially a “cure” for Evan and his Maple Syrup Urine Disease. He will be able to eat everything a child should be able to eat. He will be able to have a donut, drink a glass of milk, enjoy a happy meal with his sister, eat a piece of chocolate… things you and I take for granted. We won’t have to worry about whether the next common childhood illness will cause him to be hospitalized or not. We won’t have to fear brain damage from the buildup of toxins in his blood during illness. He will have the freedom to eat many different foods and be able to live a normal life, something every child deserves. This new liver would be the greatest gift ever. Please consider viewing the fundraising site http://achangeforevan.org/ to contribute a monetary donation to help with the medical costs associated with a liver transplant. We want to thank you for all your love, support, and prayers since Evan was born. We ask that you continue to pray for our little "sweet" boy so that he may receive a new liver and start the next chapter of his life.
