Written by: Rhonda Fenske, Liver Transplant Recipient
I have a friend and his name is Jesus Christ. He is my Lord and Savior, and He is with me everywhere I go. He knows my every thought, need, and concern; moreover, He is my guiding light that leads my life. Sometimes, I have to wait for his answers, and sometimes, I am unsure of what His answers will be. However, He always knows what’s best for my life.
On May 1, 1971, I was diagnosed with a rare cholestatic liver disease called Alagille Syndrome. At that time, there were only thirteen cases in the world. Still today, Alagille Syndrome is considered to be very rare. With this disease, I had severe itching, jaundice, prominent facial characteristics, stunted growth and it affected my entire body. All the specialists at Rainbow Baby’s and Children’s Hospital in Cleveland Ohio addressed the medical issues as they occurred. However, my parents were told that I would likely not live to see up to or around 3 years of age. While the Lord knew His plans for my life, I had to wait for His answer. Living with Alagille Syndrome was never easy. I spent many months in and out of the Rainbow Babies And Children’s Hospital having to go through many surgeries. My parents spent many days and nights helping me deal with severe itching and scratching all over my body and to deal with the fatigue resulting from this disease. Taking short naps in grade school, was not an uncommon event for me and as I got older, my liver disease progressed. My eyes became more yellow, and my skin had a golden appearance as if I had a tan with very dry skin.