Like most new parents, the first year of our baby’s life was not easy. Our baby girl, Charlie, was a terribly grumpy baby. She cried most of the time, and never napped during the day. Knowing that some babies just cry a lot, we wrote it off as normal. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Weeks before her first birthday, she woke up with a completely swollen face. Assuming it was allergies, we closely watched what we gave her. Then it happened again. And again. The third time round, we took her to our local children’s hospital. They ran test, after test, after test. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Then, they got a result. Erythropoietic protoporphyria (EPP). Our baby girl cannot metabolize the UV rays from the sun. EPP is extremely painful and causes the skin to swell and blister when exposed to the sun. Our little girl will never be allowed to go outside, or be near windows. She will never be able to play in the park, go to the beach, meet Minnie and Mickey, or even simple things like swimming in a pool. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Her version of EPP has also caused damage to her liver, which is an ongoing issue. Even if she stays completely away from UV rays, it won’t prevent the disease from causing further liver damage. Just before her second birthday we were informed she will need a bone marrow transplant to save her liver, and ultimately her life. So far, there is not a match in the international donor system. Finding a donor match could mean that perhaps one day, she will feel the sun on her skin. But we are racing against the clock. She needs her transplant ASAP. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
No one can prepare you for the roller coaster ride of parenting. And no one can ever prepare you for having to hear the news your child will live a life far more limited than you could ever imagine. Despite the challenges, she is a happy little girl. She’s still too young to understand her life is different. She laughs freely, and smiles often. She is the brightest light on a dark day. And we pray we can have endlessly more days with her. She deserves the world, and we can only hope that she will see it in person.
Charlie
