Before I met my husband, I never knew anybody suffering from a chronic illness. Corey spent his childhood suffering from liver failure. His mother passed away when he was 10 years old, she was waiting for a transplant. My husband received his life-saving liver transplant when he was 19 years old.
When Corey and I found out that we were going to have a baby, I was scared. I worried that our child would have to have a transplant like Corey did. It was a tough pregnancy, with frequent appointments to check on the baby’s health.
Our daughter Rae was born full term at 5lbs 5oz. The doctors saw she was jaundiced and took her straight to the NICU. We discovered she was having problems with her kidneys. The medical team came into my room the day after she was born and told me that they had done an echocardiogram and had found several heart defects. The decision was made to transport Rae to the Children’s Hospital by helicopter where specialists could examine her.
I had no idea what to expect and I was terrified for my newborn. Rae and I ended up spending her first four months of life at the Children’s Hospital, three hours from our home. At one point they told us they weren’t sure she would make it no matter what they did and that her father and I had to make the decision to either move forward with medical intervention, or let her go.
Rae is now 5 ½ years old. She has suffered through 15 operations with more in her future. She takes several medications, has sleeping problems, growth problems, and hardly eats. Her days are spent between home, school, daycare, therapies, doctors’ visits, driving to the children’s hospital for check-ups with all her specialty doctors, labs, x-rays, EKGs, and ultrasounds.
Discovering a treatment for ALGS could mean so many things. Another child won’t have to suffer like my daughter. A parent won’t have to lose their child. A child wouldn’t have to lose their parent. A mother wouldn’t spend hours crying over the guilt of all the things she puts their child through.
Support research for ALGS and create hope for families like mine.
-Jazmyn, Rae’s Mom