Jackson was born on April 21, 2023. He was the most precious little boy. Everyone who met him instantly fell in love with his sweet personality. His smile could light up the room. He was our first and only child, and brought the most joy into our lives.
Shortly after Jackson was born, he was placed in the NICU for respiratory problems. We initially thought it was due to his inhalation of amniotic fluid during birth. As the days passed, he was lethargic and had a poor suckling reflex. The nurses and doctors knew something wasn’t right, but they didn’t know what. They tested him for Prader-Willi Syndrome. The day we went home from the hospital (two weeks after birth), we recieved the results. He tested negative! We thought we were in the clear. Little did we know that our lives would be turned upside down a year later.
Jackson was always a poor eater, and feeding him was a challenge. It took such a long time and sometimes felt like all we did. When we started solids, he did okay at first, but as time went on, even that became difficult. He was meeting all of his milestones, so we just chalked it up to having a picky eater.
Weeks before Jackson’s first birthday, we noticed that his eyes were droopy. Again, we just thought this could be normal. Maybe he was going through a growth spurt and was extra tired. Two weeks after he turned one, he started exhibiting uncontrollable tremors. I took him to Prisma Health Children’s Hospital in May 2024 and they admitted us. During our two-day stay, Jackson underwent many blood draws, an MRI, CT scan, and Lumbar puncture.
I’ll never forget the neurologist coming in and sharing the devastating news. We were referred to genetic testing to confirm the diagnosis. Weeks later, we received the official diagnosis of Leigh syndrome with a mutation in the MT-ND5 gene. I decided to get tested, and when the bloodwork came back negative, I wanted to confirm it. I also tested via urine sample. Once again, the results showed I was not a carrier.
Unfortunately, Jackson had a de novo mutation, which is so incredibly rare. After his diagnosis, we had the best two months at home. We spent that time swimming, playing, and loving on our little boy. Then, in August of 2024, we found ourselves back in the hospital. Sadly, this time, we stayed until we ultimately came home on Hospice care. Jackson peacefully passed away at home on October 15, 2024.
Jackson loved being the center of attention, and boy, did he get attention! He loved playing, swimming, smiling, going on walks outside, reading books with mama and daddy, snuggling, singing, and bath time.
Our strength comes from Jesus. He has carried us through the darkest days.
I will always remember Jackson’s snuggles and his smile. My goodness, that smile was contagious. His smile made you want to smile.
Please know that you are not alone in this. This is never a club you want to be a part of, but I have met some incredibly kind and supportive people who have become friends through the Leigh syndrome community. Lean on your friends and family. There is no way I could have survived this last year without their support.
I want the world to know how special Jackson was and will always be. To honor him, I want to show kindness to others. On his birthday this year, we made baskets for the amazing hospital staff who took care of him for those two months. We also made baskets filled with goodies for families who find themselves on the PICU floor. On Jackson’s birthday each year, I want to do an act of kindness to show others love. We will also celebrate and sing happy birthday to our sweet boy in Heaven.
