Sweet Tobin Grace
Tobin’s mama Meagan won my Giving Tuesday giveaway last fall, and we finally got a chance to schedule their session recently. I’ll let you read a little bit about sweet Tobin Grace and their journey with Canavan Disease in her mom’s own words.
“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’s prognosis is fatal unless 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!”
You can find Tobin’s fundraising page here: https://www.gofundme.com/f/save-tobin-grace
You can keep up with Tobin’s progress on her Facebook page here: https://www.facebook.com/TobinsTime/
In honor of Tobin’s 2nd birthday, which is Friday, September 27th, I’ll be giving away a spot in my Christmas Tree Minis – a $200 prize! These will be held in Cedar Rapids at the end of November, and will include 5 images with print release.
To enter: make a donation to Tobin’s fundraising page (linked above). Screenshot your confirmation page and email it to me – Rebekah@RebekahStewartPhotography.com. I’ll choose a random winner on Tobin’s birthday – Friday, September 27th.
The fine print: No cash value. May be used on Christmas Tree Minis 2019 session in Cedar Rapids only. If you are not local or cannot attend on the date, you may gift your session to a friend. Winner will be drawn at 8 PM on Friday, September 27th. If attempts to contact winner go unanswered, a new winner will be drawn.
