Help Alwyn Overcome SCID: Support Her Journey

My name is Leah Eads. I am Nene to this beautiful little girl! Alwyn was born on February 17, 2025 healthy as can be or that’s what we thought anyways!

Tuesday night we received a phone call from the immunology department at Children’s to let us know one of Alwyn’s newborn screenings came back very abnormal. He asked us to come in first thing Wednesday morning for confirmation testing. Sadly, the testing revealed that Alwyn has an extremely rare immune deficiency called SCID (severe combined immune deficiency) which in layman’s terms means she does not have a functioning immune system. We are so thankful for modern medicine because for a baby with this disorder 50 years ago, their life expectancy was 1-3 years of age. Today, there is a cure with a 95% success rate & she will go on to live a completely normal life. However, the cure for this deficiency is not an easy road. It consists of complete isolation from friends and family for months, a round of chemo, a bone marrow transplant, and a lot of hospital time. It’s been hard for us to come to terms with our newborn being put through this. The bone marrow transplant will give her a completely new immune system, and by her 1st birthday she will be a perfectly healthy girl. It is important for the doctors and transplant team to move quickly, so within the next 3-4 weeks she will be admitted to Children’s to begin her chemo and await her transplant. Until then, we have nearly daily doctor’s appointments, a few short hospital stays for IV medication and labs, and already began our isolation. Her Daddy and mama are absolutely heartbroken, but have already seen Jesus’s hands on her during all of this. We are blessed with an amazing village, but still please keep us and sweet Ella Cate in your prayers because this is going to be very hard on our hearts. I will try my best to update here as our journey progresses. We love this baby girl with our whole entire hearts & cannot wait for this to be just a story we tell her someday.. As I stated above there will be many hospital/doctor trips and overnight stays, so any little bit will help! Thank you and God Bless each and everyone!