CEDAR RAPIDS, Iowa (KCRG) - Meagan Rockwell has started a desperate campaign to raise funds after her child was diagnosed with an ultra-rare brain disease, called Canavan.
The condition slowly deteriorates the brain. Doctors gave the Rockwell family's daughter, Tobin, less than ten years to live. Children with Canavan seldom learn how to walk or talk.
The condition is extremely rare. Only about 600 people in the world have been diagnosed and there haven't been clinical trials for treatment yet.
Rockwell found hope through Canavan Research Illinois. It's a group that advocates for kids with the disorder and helps raise money for treatments.
With the group's support, Rockwell found out about an alternative gene therapy set to soon undergo a series of private trials. Insurance doesn't currently cover it the procedure, meaning Rockwell will have to raise a hefty amount of money for her daughter to participate.
"I feel like when it comes to the value of a child's life, there shouldn't be a price tag but for our child there is," said Rockwell. "Two-hundred and fifty thousand dollars could save Tobin."
Founder of Canavan Research Illinois, Ilyce Randell, said funding is often the biggest impediment to getting treatment in privately organized trials. She recognized the cost is steep, but said it's imperative that it's met.
"Tobin's situation is that if everything is approved and fully-funded, she'll be treated," Randell said.
Randell started the group after her son, Maxie, was diagnosed. While there is no cure, Randell said gene therapies have dramatically improved over the years. Those that can afford them are seeing a better quality of life and a longer lifespan.
"As far as being diagnosed with Canavan disease, this is probably one of the best times that has been possible to receive treatment," said Randell.
Several gene therapy treatments later, Maxie has made it to 21-years-old. His mom said he continues to show progress.
Rockwell hopes, with enough money, her daughter will have a similar outcome.
"With this treatment, she could walk, she could talk, she could say mommy and daddy and we'd finally get to hear that sweet little voice," said Rockwell.
Rockwell is praying the generosity and kindness of others will get her to the goal by next July, when she hopes the trials get FDA approval.
If you'd like to help, click here for their GoFundMe site, or if you'd prefer to send a check, you can make it payable to Meagan Rockwell or Tobin Hansen at:
Grace United Methodist Church
PO Box 27
Brooklyn, Iowa 52211