SHELBY — Bright blues peak up toward the ceiling under blonde tendrils of hair. Sucking on a bottle in his little lounge chair, Camden Fuller seems like any other 17-month-old child.
The truth is, Camden is unable to roll, crawl or stand without assistance because of a rare disease known as spinal muscular atrophy.
Camden’s behavior seemed off at three months old–he wasn’t as mobile as what’s considered normal for that age. “The doctors told us he was lazy because he was a big baby,” said his mother Ashley.
She and her husband Zack continued to keep a close eye on Camden and voice their concerns to doctors. Eventually, they were referred to Akron Children’s Hospital, where doctors performed a nerve conduction study. Results showed that something was wrong, potentially spinal muscular atrophy.
Doctors at Nationwide Children’s Hospital in Columbus confirmed that it was SMA–a disease that affects the motor nerve cells in the spinal cord, taking away one’s ability to walk, eat, or breathe. Camden received this diagnosis the day before Thanksgiving.
According to Cure SMA, this is the number one genetic cause of death for infants.
“We’re still learning about it,” Ashley said. “There’s a lot that goes into it.”
The SMN1 gene provides instructions for making the survival motor neuron (SMN) protein.
“Camden is missing the SMN1 gene, so his body doesn’t produce that protein to keep him strong,” Ashley explained.
With assistance, Camden was able to roll from his belly to his back at five months old, but he hasn’t since, nor is he able to sit up, crawl, or stand on his own.
He’s on thickened liquids and has a cough assist machine to help clear secretions from his lungs. “He also has a vest that vibrates his chest walls to help keep his chest clear because his muscles are so weak that he can’t cough anything up,” Ashley said.
At nighttime, he has trouble sleeping because he’s unable to turn himself if he’s uncomfortable, so his parents have to reposition him.
“But for the most part, he’s a happy baby,” she said.
Two days before Christmas, the Food and Drug Administration approved a drug for SMA called Spinraza.
“It is not a cure, but with the treatment, it is supposed to help slow and stop progression of the disease,” Ashley said. “With babies that have been through trials of it, there are some babies that are walking and crawling.”
The Fullers are in the process of getting the drug–which costs $750,000 for the first year–covered by their insurance.
Ashley is hopeful that Camden will begin receiving treatment this year. The procedure involves two spinal injections the first month and then every three months after that for the rest of his life, Ashley said.
Both Ashley and Zack work fulltime jobs to make ends meet–Ashley is a bank teller and Zack a diesel mechanic. They also have a 6-year-old daughter, Karlie.
“With us not knowing what the future holds for us with Camden, this is a time for us to be able to enjoy our time with him and not have to stress,” Ashley said.
To support the Fullers, a benefit is being held Sunday, Feb. 26 from 1 to 6 p.m. at the Norwalk Eagles building at 151 Cline St. Attendees are asked to pay a $10 donation for adults and $5 for children five and under. There will be a live auction, raffles, bake sale and more.
There is also a bank account set up at Civista Bank in Shelby under “Cure for Camden.”
The Fullers hope to help raise awareness of SMA and eventually see a cure for the disease.
