Hi, my name is Shannon. I have started this page because a close friend of our family, who was our nanny and a huge part of our lives for 3 years, is in a heart-breaking situation with her two adorable twin boys, Stetson and Colton. Stetson and Colton were born a little over a year ago with a very rare disease called Maple Syrup Urine Disease (MSUD). Don't let the name throw you off, it is a very critical and life-threatening disease where the body is not able to process many amino acids which causes a very harmful build-up of substances in the blood and urine. Shortly after she was cleared to leave the hospital with, what she thought, were two healthy baby boys, she was called by her doctor and told to return immediately. Luckily the disease was caught when it was and the family thought they had set them up for the care they needed including my friend, Joslyn, quitting her job to take care of them and even with that, needing to find 24-hour in-home care so that the babies were constantly monitored. Their diets are severely restricted and even with that, they have both been on and off feeding tubs. However, this disease has been unpredictable and the family has spent many days/months in the hospital with their babies. The first round of even more unsettling news came when they found out that both boys would need liver transplants. Even though it was caught early, it still damaged their livers before they were put on a strict diet and started treatment. At this time it was also learned that Stetson would need to have open-heart surgery on June 19th to correct his pulmonary venous return. All seemed to be going well and he even sat up and said "mama" for the first time a couple of days after surgery. Unfortunately, shortly after that day, everything changed. Due to his MSUD he has suffered many setbacks. As of a couple of days ago he had to be intubated and has gone into a metabolic crisis and also suffering from septic shock. Joslyn has had to juggle being at the hospital with Stetson in the ICU and being with Colton at home. With all of this going on, Joslyn, who is a single mom, has worked so hard to stay strong and positive and not reach out for help. However, as the days go by and Stetson's condition is hour by hour the expenses are adding up. Please help her and her boys fight this nasty disease.
Artículos relacionados
