Save Baby Tobin: Family needs $250,000 for daughter’s life-saving treatment

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CEDAR RAPIDS, Iowa (KWWL) — The new year is a time for new goals, hopes and dreams for 2019, but for one Cedar Rapids family, their goal is simple. Raise enough money so their daughter, Tobin can see many more new years to come.

Tobin Hansen has a rare illness called Canavan Disease. Most kids with the disease don’t live past age 10. An outcome parents, Meagan and Heath are trying to beat.

Tobin is a special little 15-month-old girl. One of about 300 in the world diagnosed with Cavanan, an extremely rare brain disease, that slowly destroys the white matter in the brain, explains Tobin’s mom, Meagan Rockwell.

“As it progresses she’ll lose her abilities, like her ability to swallow and sometimes to breathe on their own, just it slowly kills them,” said Rockwell.

The family has been living with the diagnosis for almost a year. The whole time spent searching for answers or a treatment, to save their babies life.

They finally found hope with a pair of doctors working on ground breaking gene therapy.

“They think that they finally have something that is so promising in the results,” said Rockwell.

The research is so new, only five to seven kids will get the gene therapy, which requires brain surgery, and comes at a very hefty cost.

“The money is our guarantee into saving Tobin. We get the $250,000 and that is the amount that could save our child’s life…”

The disease comes with many costs, like Tobin’s special adaptive toys and strollers. This therapy would be another, but it’s one the family eagerly wants to pay.

“Right now they’re telling us she’ll never walk, she’ll never talk. With this, there’s a possibility that she could walk, she could talk. She could say mommy and daddy and live a life full of possibilities,” said Rockwell, “When it comes to saving your child’s life you can’t but a price tag on it but we have one and we’ve got to get to that goal to get her this treatment to at least give her a chance.”

In a couple months the family has raised 6% of their goal on gofundme but they need 100% to make this happen. The disease is so rare funding for research is hard to come by, leaving the financial burdens on the families.

Read the original story and hear from Tobin’s grandmother, here.

Follow Tobin’s journey on Facebook.

How can I help?

A GoFundMe page has been started for Tobin, you can donate to that here.

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

Grace United Methodist Church in Brooklyn, IA is also collecting donations for Tobin. You can drop in or mail them to:

P.O. Box 27

Brooklyn, IA 52211

All checks can be made payable to Meagan Rockwell or to Tobin’s dad, Heath Hansen.

Ashley Neighbor

Ashley Neighbor

Reporter, Cedar Rapids
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