Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature death, within mid-childhood.
What is Canavan Disease?
Canavan disease is a rare inherited disorder that damages the ability of nerve cells in the brain to send and receive messages. Canavan disease is a disease in a group of genetic disorders called leukodystrophies.
Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses. Canavan disease is progressive, fatal, and begins in infancy.
The following symptoms are characteristic of Canavan disease:
- Rapidly increasing head circumference
- Lack of head control
- Reduced visual responsiveness
- Abnormal muscle tone such as stiffness or floppiness
- Developmental delays, such as difficulty crawling, walking, sitting, or speaking
- Blindness, deafness
- Trouble swallowing
Unfortunately, many children do not live past age 10.
Raising Funds for Hope
At four-months-old, little Tobin Grace Hansen was diagnosed with Canavan disease.
“We were told she would never walk or talk, and would lose her ability to swallow. The damage is progressive,” said Keri Hansen, Tobin’s grandmother. “Tobin turned one in September but has no head control and cannot roll over.”
Despite these difficulties, there is hope.
Doctors working with the Hansen family have sought approval to use a Canavan gene therapy developed in a specific trial, involving the injections of corrective genes into the brain.
However, access to this trial treatment opportunity comes with a hefty $250,000 price tag.
“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,” said Keri.
That’s where we come in!
And make sure to check out her advocacy Facebook page for people to learn more about Tobin and Canavan disease, as well as her accomplishments and her setbacks.
Lastly, for any Iowa locals, 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
Anything you can do to help this family give their daughter fight this disease will be greatly appreciated!