Ayah Jaber

Ayah is a happy and inspiring eleven year old, fifth grader at a public school in Maryland.  Ayah is the big sister to three siblings, Tahani (9) , Sireen (7) and Adnan (3).  Ayah was born in 2003, and five weeks after her birth, she was diagnosed with biliary atresia.  Since day 2 of her life, Ayah has required treatment with some form of medication.   At seven weeks of age, Ayah underwent her first surgery, the Kasai procedure.  In the years to follow, Ayah was closely monitored by her medical and surgical teams in the outpatient and inpatient settings for her progressing liver disease.  Ayah suffered common biliary atresia related bone complications, vitamin deficiencies, and delayed neurological development.

In 2008, Ayah’s medical condition worsened, and her status on the liver transplant list was given higher priority.  In December 2008, Ayah underwent liver transplantation.  The liver transplant failed within the first 24 hours, so she was immediately placed status 1 on the nationwide transplant list.  She was in complete liver failure and placed on life support measures.  By the grace of God, Ayah received a second liver two days after the first transplant surgery.  The second transplant was successful. After several weeks of inpatient care, she returned home under strict isolation precautions. She continued to be closely monitored by her medical and surgical teams.  Since she had lost 1/3 of her body weight post-transplant, she required NG tube supplemental feedings upon her return home.  She also experienced a bout of rejection that required readmission for high dose steroids. She would miss the remainder of her Kindergarten school year.

In the Fall of 2009, Ayah returned to school and resumed her childhood☺   2010 was the only year she finally experienced no inpatient hospitalizations.  Unfortunately this would not be the case in 2011.  In January 2011, Ayah was diagnosed with stage III Burkitt ’s lymphoma, complicated by acute renal failure that required temporary dialysis.  Ayah’s treatment plan required lengthy inpatient stays for chemotherapy that included intrathecal injections.  After her third chemotherapy regimen, it was discovered that therapy had failed and she would require an autologous bone marrow transplant.  Ayah would endure at least 200 days inpatient in 2011, with many outpatient visits to the oncology clinic.  Ayah also had a double lumen Hickman for a year and half while she continued to receive IV treatments that included TPN, anti-fungal therapy and blood product transfusions.  Ayah would miss another year or so of schooling during this time period.  After her bone marrow transplant, within a couple months, Ayah showed signs of liver rejection.  She had to resume high dose steroids and ultimately transition to a new immunosuppressant not typically administered to liver transplant recipients.

In the Fall of 2012, Ayah resumed school and thankfully had no evidence of residual lymphoma after serial imaging studies.   Ayah continues to be closely monitored and is beginning to experience the long term side effects of her multiple and various treatments.  She still requires regular outpatient clinic visits with various specialists, blood draws and radiologic studies.

Despite all that Ayah has endured, she maintains a wonderful disposition and beautiful smile.  Every day is a challenge in some way, shape or form for Ayah, but she continues to demonstrate resiliency and strength beyond her years.  Ayah loves to be around people and is always sensitive to other’s needs.  She loves dance, singing, fashion design, art, and all things creative.  She serves as an inspiration for many and a voice for the work her mother and father do every day.  Ayah is always a strong advocate in her medical care.  She has expressed interest in sharing her experiences and representing other children who are also chronically ill.