Corey, Jazmyn, and RaeLynn
As the mother and wife of ALGS warriors, a discovery for ALGS would mean the entire world to my family and me. Before I met my husband Corey, I never knew anybody suffering from a syndrome or disease; I knew they existed, of course, and knew of the more popular diseases but I had never met anyone who’s life was truly impacted by one. My husband spent his childhood suffering from liver failure and all the unpleasant side effects that came with it. He spent his childhood with a mother who was also sick. She passed away when he was 10 years old waiting for a kidney transplant. My husband received his life-saving liver transplant when he was 19 years old.
When he and I found out we were going to have a baby, I was scared. I was only 18 years old and thought our child would have to have a transplant like he did. It was a tough pregnancy with weekly appointments to check her health and growth. She was very small, born full-term at 5lbs 5oz. During a prenatal appointment they found she was having problems with her kidneys. Doctors made sure we were prepared, telling us we would have to take her to the children’s hospital (about a 3-hour drive for us) shortly after her birth and have her checked out and watched by a nephrologist. When she was born she was jaundiced and was taken straight to the NICU where they struggled to keep her O2 sats up. The doctors couldn’t get them above 80%. They came into my room the day after she was born and told me they did an echocardiogram to check her heart function and found several heart defects, sent the DVD to the children’s hospital, and said they were sending the helicopter to come and get her. While there, they found extremely high total bilirubin levels and kidney levels. I had no idea what to expect and was terrified for my newborn. My daughter and I ended up spending her first four months at the children’s hospital three hours from our home while the doctors did operation after operation on her heart. They would always tell us they weren’t sure if the surgeries would work and, at one point, said they weren’t sure she would make it no matter what they did. They told us we had to make the decision to either move forward with medical intervention or let her go.
Our little girl is now 6 years old. She has suffered through 16 operations with more to come. She takes several daily medications twice a day, has sleeping problems, growth problems, and several issues related to her health. She spends her days going between home, school, six different therapies, her regular doctor visits, and driving to the children’s hospital for check-ups with all her specialty doctors. She gets regular labs, x-rays, EKGs, and ultrasounds. Through all of this she has developed anxiety, depression, and PTSD along with other psychological issues. Significant scientific discovery for better treatments of ALGS or a cure could mean other children won’t have to suffer like my daughter. Parents won’t have to lose their children and children don’t have to lose a parent to ALGS, like my husband did. Mothers wouldn’t spend hours crying over the guilt of hard decision making, watching their children suffer, or losing their children to early. It’s my hope that everyone might take the time to understand that ALGS research isn’t defined by borders or countries, it helps everyone in the world suffering from ALGS. It could open many doors for many linked syndromes and diseases, create better treatments, and uncover the cure. Supporting research for ALGS is so important and discovery won’t happen without community support nationally and internationally. For families like yours and families like mine.
By Jazmyn from Iowa