Meet our sweet daughter, Tobin Grace Hansen. Our beautiful girl 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.
Everything seemed perfectly fine when Tobin was first born, but at two months we began to notice something was wrong. Four days after Christmas, Tobin was admitted to the University of Iowa Children's Hospital and an MRI concerned doctors and a urinalysis was sent to the Mayo Clinic for a further look.
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 almost 2 years old and happy as can be. She is strong but has no head control or trunk control. She is developmentally that of a 4 to 5 month old.
Tobin prognosis is fatal in less she receives new ground breaking gene and stem cell therapy replacement trough brain surgery. But ONLY if we can raise the $2,500,000 for the operation being raised by us and 8 other families. With out this treatment Tobin will most likely not live to see her 10th birthday. This treatment is crucial in saving Tobin’s life.
We hope to raise this life saving money by September 2019 so treatments can start at the beginning of 2020!!!!
Please follow her journey on Facebook at Tobins Journey.
For more information on Canavan Disease please visit: www.curecanavanfund.org
Thank you all for your amazing support!