Saving Tobin Grace!

$69,736 of $250,000 goal

Raised by 858 people in 13 months
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!
+ Read More
We are running out of time!

Tobin is running out of time!

Deadline is the end of September 2019!

We need to set the fire of how desperately we need to fund this treatment for the children of Canavan disease!!

The cost to treat up to 10 kids is going to be around 3 million dollars. There are other families like ours fighting hard to raise money!

Work is in progress to manufacture the drug for the clinical trial and production may pause if money raised is not sufficient. Drug production will be reinstated when money becomes available but we are very much hoping to reach our financial goal and avoid any pausing time.

Time is running out as all of us are working hard to save our children we just need to raise as much money possible that the researchers are able to continue to get this out of the lab and not have to stop because of money! I’m confident that working together we won’t have any issues getting to our main goal of saving these kids!!

We need your help!

Follow Tobin at Tobins Journey!

Please I’m one desperate momma trying to save my baby!!

Your donation matters!!
+ Read More
Here are the BRAVE children that are waiting for gene therapy!

As minutes, hours, days, weeks and months pass that these children don’t receive gene therapy this horrible disease is progressing taking away precious time!!

Your donation will save them!!!!

Together we will raise this money to help save these kids! I’m one desperate mom trying to save my baby girl to have more precious time with her! The thought that one day I could lose my baby hurts so bad! The researchers have been working so hard and dedicating so much time so we won’t have the fear of losing our children!! We will fund this!!

Please take a moment to watch this video I have put together! The song is absolutely amazing and heart touching!

This song was done by Sean Gaiser who’s daughter Dolly also has Canavan Disease!

Song: Brave by Sean Gaiser
+ Read More
Thank you all so incredibly much! It’s so heart warming with all the support!!

Gene therapy will save Tobin and the other children with Canavan disease!

Us and 8 other families are fighting hard to get this therapy out of the lab and to the children that need it roughly 2.5 million dollars is needed but if we work together we will hit our main goal of saving them!!!

Your donations are crucial in saving Tobin and the others! Please share Tobin with everyone you meet!!!

We love you all!
+ Read More
Thank you all for your donations it means so much to our family! Donations are still desperately needed!!

Your donation is key to saving Tobin Grace before this nasty disease takes her from us!

Work is in progress to manufacture the drug for the clinical trial and production may pause if money raised is not sufficient. Drug production will be reinstated when money becomes available but we are very much hoping to reach our financial goal and avoid any pausing time. Time is not on our side with the progressive disease!

We can’t let that happen!

Tobin recently underwent surgery to place a Gtube for medication and nutrition. One more sign that this disease is progressing!

No amount is to small! Thank you from one desperate momma!!
+ Read More
Read a Previous Update

$69,736 of $250,000 goal

Raised by 858 people in 13 months
Your share could be bringing in donations. Sign in to track your impact.
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
1 day ago
1 day ago
Joanne OConnor
1 day ago
Nick Williams
1 day ago
Katharine Wilson
2 days ago
Kristina Walton
2 days ago
5 days ago
Amanda Shindelar
8 days ago
9 days ago
Jill Buelow
11 days ago
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.