My husband and I tried for a year to get pregnant but were successful the day we saw our infertility doctor. Thankfully, my pregnancy was normal and uneventful. Atticus Avery Gamble was born May 19, 2019. Everything was perfect, healthy, + normal.
At 2 months old, Atticus wasn’t holding his head up. Being a first time mom, I didn’t know this was abnormal and, at his 8wk appointment, his nurse practitioner reassured me and dismissed my concerns.
At 4 months, Atticus still couldn't hold his head up. While filling out his pre-appointment paperwork, I realized that he wasn't hitting any of the expected milestones. His pediatrician immediately explained he had hypotonia (low muscle tone). And with that, our journey began...
Atticus started PT. He failed his hearing test and had tubes placed on his ears at 6mos. He did neurology testing, an MRI, microarray genetic tests, blood tests, you name it! Everything was coming back normal. He began rolling over (a milestone we were super excited + encouraged about) but then regressed and was unable to a month later. Suddenly we were in a cycle of progress and regression. Still, everyone believed he would grow out of it.
His primary doctor wanted answers. During an eye exam at 10mos, we learned he had a cherry red spot on his eye. Shortly after, his neurologist ordered a specific genetic test. Two days later, I received the call confirming my suspicion. My son was diagnosed with infantile tay sachs disease- a fatal disease with no cure and a life expectancy of 2-5 years. Lacking enzymes to filter waste out of the brain, affected children become blind and deaf, experience seizures, inability to eat, respiratory issues, and eventually die.
My heart was broken and my grieving began the day we received his diagnosis- March 14, 2020. The disease quickly progressed. Atticus had surgery for a G-tube placement. He had seizures. He was unable to move on his own. He endured countless breathing treatments. Had a pneumonia more times than I can count. But matter how bad things were, he was always so happy + had such a sweet spirit. By the time he passed, his little body was on 26 different medications.
Atticus passed peacefully in my arms on February 14th, 2021 at 20 months old.
It’s been almost two years and not a day goes by where I don’t think about him and grieve him. I miss my son terribly. Some days the hurt and sadness consumes me, but, as a mother, I’m happy he is no longer suffering.
We connected with NFTS thru my husband's colleague who serves as a NFTS Angel Ambassador. This organization has been a big support through our journey of grief and I am forever grateful to have found them.
IN HONOR AND CELEBRATION OF ATTICUS, DONATIONS CAN BE MADE HERE. ON BEHALF OF THE GAMBLE FAMILY, THANK YOU FOR YOUR GIFT.