Malaya Gohn’s Transplant Fund

Amanda Coble is organizing this fundraiser.

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I am writing you on behalf of our daughter, three year-old, Malaya Gohn, a local baby girl fighting a life threatening disease- Megacystis Microcolon Intestinal Hypoperistalsis Syndrome. Malaya is fighting a battle most people could not even imagine. First, being born without oxygen and blood flow to her brain and vital organs. It is a miracle Malaya has no brain damage, out of the dozen plus specialists she sees, neurology is not one. She was born with a rare genetic syndrome which affects the smooth-muscle movement in her body. This means she has complete intestinal failure and cannot digest food. Therefore, Malaya has to get all of her nutrition (called TPN) intravenously through a central line to her heart. She spent the first five days of life at a local hospital NICU. She was then flown by Life Lion and for 6 weeks spent at Penn State Hershey Children’s Hospital, where she was diagnosed and us, her parents, were taught her care to bring Malaya home. Throughout the past four years, Malaya has been admitted over 300+ days; ER trips for fevers, line infections and breaks, breathing complications, blood transfusions, and more. She is attached to an IV for 18hours a day, has multiple other medical needs due to her disease, and will likely need a multi-organ transplant in the future.

Malaya turned four March 25th. Practically EVERYTHING about MMIH research, prognosis, education, and advocacy has changed and grown by leaps and bounds over these past few years of her life. However, due to the IV nutrition Malaya needs to survive, her liver has become damaged and will only continue to. Our family and team of doctors has made the decision for Malaya to be evaluated at Pittsburgh Children’s Hospital to be listed for a multi-organ transplant.

* UPDATE: In May, Mother’s Day weekend , Malaya was listed for multi-visceral transplant. This includes: liver, intestines, stomach, and pancreas and remove her spleen. We will be away from our home, 6-year old son, pets, once she undergoes transplant, our family will need to temporarily relocate to Pittsburgh for minimal of six months- to a year.

We are asking for your help with funding to travel, food and place to stay within the city. Until transplant happens we will need to make trips to to Pittsburgh Children’s Hospital for Malaya to continue to have a thriving life. From doctor visits to even hospital admissions, this will become a main hospital for her.

She truly is our miracle baby and transplant may be her next best step to continue a thriving quality of life in the future. The amount needed will be changing as we learn more about what her needs will and won’t be and what insurance covers and won’t cover. We appreciate your prayers and kind words as we navigate our next steps together.