Norah Jean Schweitzer liver transplant journey

I’d like you to meet my 7 year old great niece Norah, who loves to sing, dance, swim and paint. She was diagnosed with Alpha 1 Antitrypsin deficiency(Alpha 1) at the age of 3 months in 2016 when her mother Beth noticed that her “breastfeeding jaundice” was not improving. After hospitalization, GI consults and genetic testing it was determined that Norah has the  ZZ gene which gave her the worst case scenario for the disease. Her liver quickly progressed to cirrhosis with spleen and liver enlargement and sent them on the transplant road. Between frequent blood work, ultrasounds and visits to CHOP where she’s been followed as a pre transplant patient, its been a very emotional and financial stress on her parents Beth and DJ along with their children Audrey 13 and Molly 9. Her grandparents and the rest of the family have supported them during the dangerous pandemic due to Norah being immunocompromised but she was staying pretty stable with the constant knowledge that someday she may need a transplant.

Well unfortunately that someday has come after Norah was diagnosed with a rare complication called Hepato-pulmonary Syndrome that affects the heart and lungs due to portal hypertension from her liver disease. The only “cure” is liver transplant which they found out at a consult in University of Virginia Children’s Hospital(UVA). After careful consideration Beth and Dj have decided to have Norahs transplant there.

Last week Norah and her family spent 2 days getting tests and meeting with the transplant team, financial advisors and psychologists to prepare. The liver transplant will take 12 hours and will require 2-3 weeks in the hospital along with 2-3 months of living near UVA hospital for after care in an apartment because its 3 hours away from their home in Virginia Beach. There will be many out -of-pocket expenses including insurance deductibles and copays , hotels, the apartment or Air BNB, food, gas, loss of work for her father DJ, and medical expenses after transplant which includes taking 18/pills a day to prevent organ rejection.

As Beths aunt I am asking for anyone willing to make a donation to help our sweet Norah.

I will continue to provide updates on Norahs transplant journey. Our entire family thanks you from the bottom of our hearts!