Mara’s Liver Transplant Expenses
Donation protected
Mara is our beautiful, loving, funny, and amazing soon to be two-year-old. Mara was diagnosed with Citrullinemia when she was four days old. We almost lost her due to a metabolic crisis which causes ammonia to build up in her blood. Normal newborn ammonia levels are less than 50, Mara’s ammonia level was 2,389. We were told Mara would need a liver transplant and we promised to do everything we could to get her the best care possible.
Mara had frequent hyperammonemic episodes throughout her first year of life. She spent almost 100 days total in the hospital needing hemodialysis and several daily medications.
Mara received a living donor liver transplant on 10/24/17. 5 days after her first birthday. There were immediate non-liver related complications. These complications caused her to go into complete respiratory failure and be reopened at 4 weeks post transplant to repair a hole in her diaphragm and partial resection of her intestine. I spent 57 days in Pittsburgh, PA, with Mara in the hospital while my husband and Mara’s two older brothers remained home in Ohio.
Mara’s Transplant team continues to follow her closely as she now battles Post transplant Epstein Barr Virus and has had multiple CMV illnesses too. She takes immunosuppressant medications multiple times daily for life, receives weekly/bi-weekly labs, and has PT, OT, and speech therapy 3 days a week due to global delay from her metabolic episodes. She is also still followed by her geneticist in Cleveland, OH.
Mara’s medical expenses are forever. She will be on medication for life. Co-pays, driving to and from the hospital, parking, lost wages, medical supplies, and so much more. We appreciate you supporting Mara. We ask that you keep her in your prayers. Spread awareness on organ donations and register to be an organ donor. Rare diseases are not rare. We hope we can educate and inspire.
Mara had frequent hyperammonemic episodes throughout her first year of life. She spent almost 100 days total in the hospital needing hemodialysis and several daily medications.
Mara received a living donor liver transplant on 10/24/17. 5 days after her first birthday. There were immediate non-liver related complications. These complications caused her to go into complete respiratory failure and be reopened at 4 weeks post transplant to repair a hole in her diaphragm and partial resection of her intestine. I spent 57 days in Pittsburgh, PA, with Mara in the hospital while my husband and Mara’s two older brothers remained home in Ohio.
Mara’s Transplant team continues to follow her closely as she now battles Post transplant Epstein Barr Virus and has had multiple CMV illnesses too. She takes immunosuppressant medications multiple times daily for life, receives weekly/bi-weekly labs, and has PT, OT, and speech therapy 3 days a week due to global delay from her metabolic episodes. She is also still followed by her geneticist in Cleveland, OH.
Mara’s medical expenses are forever. She will be on medication for life. Co-pays, driving to and from the hospital, parking, lost wages, medical supplies, and so much more. We appreciate you supporting Mara. We ask that you keep her in your prayers. Spread awareness on organ donations and register to be an organ donor. Rare diseases are not rare. We hope we can educate and inspire.
Organizer
Gina DiAngelo Petrochello
Organizer
Ashtabula, OH
