So much has happened since I last wrote that the best thing to do is to start from the beginning, so that it all makes sense.
For those of you who may not know, my brother Jordan, who was born in June 1991, was diagnosed in at 7 days old with Maple Syrup Urine Disease(MSUD). MSUD is a genetic disorder in which the body cannot properly break down three amino acids found in most major proteins. This defect results in potential brain damage if these amino acid levels become elevated. At that time, the only known way to treat MSUD individuals was with a low or protein-free diet. These individuals also needed to drink a specially made formula daily and many are monitored by Dr Holmes Morton and the Clinic for Special Children.
After spending 10 days in the hospital after being diagnosed with MSUD, Jordan came home. He did reasonably well until February 1993. He contracted a virus; but after being discharged from the hospital, he went on a constant seesaw of good days and bad days. Strict food diaries were kept, but both mother and doctor were confused as to what was going on. It all reached a climax in August of 1993.
Days turned into weeks and new problems kept coming up. He started to get better, then developed cerebral edema. After a 65-day hospital stay, followed by 32 days of negative blood cultures, Jordan was finally home. Many, many doctor visits followed. From that point forward, he did not ever have a hospital stay of that length again.
*The document with the entire story: The Story about Jordan*
Fast forward to Feb 12, 1997, when amidst uncertainty, a young Old Order Mennonite girl was placed in science’s limelight. Kathryn Burkholder experienced liver failure as a result of a Vitamin A toxicity. By instruction of Dr Morton, she was admitted to Lancaster General Hospital where she was for a week before being transferred to Children’s Hospital for a liver transplant. A liver transplant that revealed a potential risk, but a possibility of new chances for the MSUD individuals.
Fast forward to April 2014, when my parents spoke with Dr Holmes Morton and made the decision to seek out a liver transplant for Jordan to lower the potential risks of brain damage and give him better overall care. Nov 4th found them in Pittsburgh to begin the process of being added to liver transplant list – a process that took 3 days. Nov 14 we received the call that Jordan was placed on the liver transplant list – where the potential wait time could be anywhere from 9 months to 3 years…..
TO BE CONTINUED!