A New Liver for Mitchell

Co-organized

Roanne Leclair and 2 others are organizing this fundraiser on behalf of Mitchell Magyar.

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Mitchell is a typical 13-year-old boy, with one exception. He has a rare Urea Cycle Disorder (UCD) that does not allow his liver to function normally. He has reached the point where he needs a liver transplant. This fund has been set up to help with medical expenses. Please consider donating to this amazing 13-year-old boy and his family, during this medically stressful and financially difficult time.

Mitchell’s story …

Mitchell was born with a rare Urea Cycle Disorder (UCD), Argininosuccinic Aciduria. He was diagnosed at just seven days old through the State of Connecticut's newborn screening test. A UCD causes a build-up of toxic ammonia in his bloodstream, which travels through his body and causes organ and brain damage, comas, and can be fatal. Mitchell also lives with argininosuccinic acid in all the cells in his body, which is not only dangerous to his entire body, but causes slow cognitive deterioration.

This past year has been extremely difficult for Mitchell and his family. Growth spurts have caused an increase in ammonia episodes, and Mitchell’s health has quickly been declining. In the upcoming months, Mitchell will undergo a liver transplant. The transplant will eliminate all future ammonia episodes and stabilize Mitchell metabolically. Unfortunately, he will still live with argininosuccinic acid throughout his body for the remainder of his life. However, the acid will be substantially reduced with this transplant, thereby reducing the risk of increased cognitive deterioration.

Mitchell’s transplant will take place at UPMC Children’s Hospital of Pittsburgh, the center of excellence for transplanting metabolic patients. This transplant requires Mitchell and his mother, Amy, to be away from home for almost two months. However, UPMC does not accept Mitchell’s secondary insurance, requiring his Mom Amy to pay thousands of dollars out of pocket. In addition, this transplant will require Amy and Mitchell to fly back and forth many times post-transplant in the following months and years for follow-up medical checkups and consultation. The family will incur medical, airline, lodging, and many other expenses during these times away from home. Throughout all of this, we cannot forget about the needs of Mitchell’s older sister Lilly. She will be at home in Connecticut but needs to travel to see her mother and Mitchell during this highly stressful time.

More details regarding Urea Cycle Disorders:

A Urea Cycle Disorder (UCD) is an inherited disease that affects how the body removes the waste made from breaking down protein.

Everyone needs protein. When a person eats food that contains protein, the body breaks it down into amino acids (the building blocks of protein that are used by the body for growth and tissue repair) and uses only what it needs. It changes the rest into nitrogen, which must then be removed by the body.

In a healthy person, the liver supplies several enzymes to change nitrogen into urea, which is then removed from the body in urine. This entire process is called the urea cycle. The liver in a person with a urea cycle disorder is missing an enzyme necessary to convert nitrogen into urea. As a result, ammonia, a highly toxic substance, builds up in the bloodstream and is not removed from the body. Often, the symptoms of high ammonia levels are invisible and undetected, until the levels are dangerously high. Untreated, these high amounts of ammonia can cause brain damage, coma, and eventually death.

Amy and Mitchell have been advocates to spread awareness regarding Newborn Screening and Urea Cycle Disorders. From hosting fundraisers, participating in studies, to writing a book to help other children understand living with feeding tubes, Mitchell and Amy have shared their journey to help other families going through this. They will continue to do so post-transplant. Living with a Urea Cycle Disorder will always be a part of their lives. Searching for a cure and raising awareness will be a cause they will never stop fighting.

Mitchell's Story Of A Rare Genetic Disorder & Clinical Trials Participation (two years ago):