Iowa Baby With Rare Disease Needs Your Help
Meet Tobin Grace Hansen. A beautiful, fourteen-month-old Cedar Rapids girl who suffers from a genetic progressive childhood brain disease. Tobin is missing a gene that is responsible for breaking down an acid in her brain. Without the gene, the acid is causing deterioration of the white matter in her brain. The disease is called Canavan and Tobin was diagnosed at just four months of age. She's currently the youngest child with the disease.
Everything seemed perfectly fine when Tobin was first born, but at two months her family began to notice something was wrong. Four days after Christmas, Tobin was admitted to the University of Iowa Children's Hospital and a urinalysis that concerned doctors was sent to the Mayo Clinic for a further look. A DNA test confirmed Tobin's diagnosis, at just four months old.
Tobin's mom, Meagan, says it was the worst day of her life:
It was January 10th, 2018. We got the most devastating news, our sweet perfect baby has an extremely rare genetic brain disease called Canavan Disease. I ask “ok what’s that mean” and all I heard was she might not live to see her 10th birthday, she won’t walk or talk. I was a mess and don’t remember anything else they said. Tobin is now 9 months old and happy as can be. She is strong but has no head control or trunk control. She is developmentally behind by about 4 to 5 months.
Tobin's grandma, Jenni, says that
Many of the children have learned to communicate with their eyes by answering yes or no questions. However, as the brain deteriorates the body’s functions also deteriorate.
Doing their own research, the family found well-known cell and neuroscientist researcher Dr. Paola Leone, who’s been working on a cure for Canavan disease for the last 20 years. Leone has found a gene and stem cell therapy that has proven to cure Canavan disease in mice and she's hopeful the children will lead happy and productive lives after having the therapy. Tobin is one of only four children selected to take part in this potentially life-saving clinical trial. However, there is still a significant amount of money that needs to be raised to start the clinical trials. Here's what you can do to help!
Please consider donating to fund this clinical research and make a miracle for little Tobin.