CEDAR RAPIDS, Iowa (KWWL) – There’s a little girl in Cedar Rapids who needs the community’s help in a big way.
At four-months-old, Tobin Grace Hansen was diagnosed with Canavan Disease. Canavan is a rare brain disease, caused by a genetic abnormality. There is no cure and most children don’t live past the age of ten, according to her grandmother, Keri Hansen.
“We were told she would never walk or talk, and would lose her ability to swallow. The damage is progressive,” said Hansen. “Tobin turned one in September but has no head control and cannot roll over.”
But there is hope. And her name is Dr. Paelo Leone. Leone is a gene therapist in New Jersey who, with her colleague, neurologist Dr. Christopher Janson, sought approval to use a Canavan gene therapy they’d developed in a specific trial. In this, they inject corrective genes into the brain.
But just a few children will have this opportunity. And the opportunity is met with a hefty financial roadblock.
“The price tag is large. There are between five to eight children who will be getting the gene therapy. Our family was told we would need approximately $250,000,” said Hansen.
And the family has been told, if the $250,000 isn’t there, Tobin will be out of the trials.
“It’s sad, but it’s pay to play. Other families are fundraising for their children and have raised a lot more money than us. We are needing Iowans to come together and help her.”
Tobin’s parents Meagan Rockwell and Heath Hansen are like any loving parents. They’ll do anything they can to help save their child’s life. That starts with the gene therapy and reaching that $250,000 goal.
They have also set up a Facebook page for people to learn about Tobin and Canavan Disease, as well as see her accomplishments and her setbacks. Visit the page here: https://www.facebook.com/TobinsTime/
The Elevate Salon & Spa in Cedar Rapids is also collecting donations for Tobin. You can drop in or mail them to:
Elevate Salon and Spa
2320 Edgewood Rd SW
Cedar Rapids, IA 52404
And learn more about Canavan Disease on the Canavan Disease of Illinois website: http://www.curecanavan.org
KWWL’s Abby Turpin will continue to follow Tobin’s journey. Check back for updates.