Luke, the son of Amelia and Justin Washington, was born on July 20, 2020.

He was born at 41 weeks and as far as we knew he was a healthy baby. Unfortunately that was far from reality. Luke was already our miracle baby because I was told by multiple doctors that I would never be able to have children. We were just over the moon about our little boy. It was so exciting being able to work on the nursery and prepare for our blessing. When Luke was born the saying mother intuition hit me at the beginning. I remember looking at him when they first showed him to me and I felt in my heart something was wrong. I remember not wanting to believe it. That feeling never left me and it only proceeded to get worse. Luke was 2 days old when he started showing symptoms. He started running cold and his blood sugar was all over the place. We thought that was scary and hard seeing him get his heel pricked every hour but that was nothing compared to what was going to come about in the next few days. Luke began to stop peeing, crying, eating, and sleeping. Basically all the normal baby things. He would just gaze and one thing and his eyes looked so lifeless. On day 4 St. Vincent’s was getting ready to send us home when we reminded them we were waiting on him to be circumcised. When Luke was taken to be circumcised he did not cry and move. Finally they believed that something was not right him. I had been crying everyday and I kept being told that the baby was fine and that I was a new mom and just emotional. I knew in my heart something was wrong. Luke was taken to the NICU St. Vincent’s right after he was circumcised. They told us they thought he might of had a stroke or meningitis. It took only a few hours to figure out it was something more complicated.

Luke’s ammonia got up to 490 the average is around 20-30). He suffered from a metabolic stroke. Luke was transported within 5 hours to Children’s of Alabama NICU. Once he was there he had to be taken down for surgery for ports to be put in place for labs and dialysis. Luke was on dialysis for about 5 days to help the ammonia come down. He had sub clinical seizures for about 48 hours. After speaking with the genetics doctors it was determined that Luke had a Urea Cycle Disorder. Further testing showed he has CPS1 which is part of the Urea Cycle Disorder.

Luke spent over a month in the children’s NICU and overcame so much in a short period of time. Luke’s liver is missing one enzyme which causes him to have this disorder. The only way to cure it is by having a liver transplant. It took Justin & I both to have two different recessive genes for Luke to have this. What are the odds... well 1 in 1.5 million. So this is very rare and hard to treat. Luke will have his transplant done in Pittsburgh, PA. We have had my sister get tested to be a living donor for Luke along with Justin but unfortunately neither one of them are matches. So we are just waiting now and praying Luke gets a liver soon. I have to wait till I am one year post partum until I can get tested. 

 

 

The hardest part about this whole journey has been seeing our baby go through so much! We wish we could take all the pain and difficult test and procedures that he has had done in the 6 months that he has been alive.

Your generous support will be used to aid in travel expenses and medical expenditures as well journey between our home in Alabama and the hospital in Pittsburgh.