Who is Tobin?
Meet Tobin Grace Hansen, a beautiful 16 month old baby girl. She is the daughter of Meagan Rockwell and Heath Hansen. Their daughter 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.
Everything seemed perfectly fine when Tobin was first born. It was a blissful time – enjoying their newborn daughter. The love they have for Tobin was apparent from day one. At two months old, Meagan and Heath began to notice something was not quite right. 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.
January 10th, 2018, their lives changed forever. They got devastating news. Their sweet, perfect baby has an extremely rare genetic brain disease called Canavan Disease. Tobin might not live to see her 10th birthday. She likely won’t walk or talk.
As any parents would do, they decided to do everything they possibly could to save their daughter. Canavan will not stop them from celebrating and loving Tobin. They began their research in to Canavan disease and finding the few resources that could help them save Tobin. On this research journey, they found Canavan Research Illinois – which has funded several gene therapies over the past 20 years.
They discovered – there already IS hope for a cure. The only obstacle standing in the way of getting closer and developing the cure is funding. Funds are needing to support FDA approval, drug manufacturing, and clinical trial insurance. The funds needed to initiate a trial are much more than $250,000; but other family campaigns are helping too!
Tobin’s prognosis is fatal unless she receives ground breaking gene and stem cell therapy replacement through brain surgery. This operation is most effective before the age of two and will hopefully start summer of 2019. ONLY if we can raise the $250,000 for the operation. Raising funds is the only way to get this treatment from the lab to the children.
It’s a pay to play situation, except playing is the therapy to save your child. Without this treatment, Tobin will most likely not live to see her 10th birthday.
What would you do?
Help us SAVE TOBIN GRACE! Hit SHARE! Check out ways to donate – via the GoFundMe or the other fundraising opportunities!
Wow huge thank you to everyone! Today has showed me that there is still greatness in this world!! Thank you to Tom who stop in to bring a donation for Tobin! His mothers funeral was yesterday and they had money from her memorial that he donated right to Tobin! It was such a touching moment meeting him and all his kindness!!Thank you Judy for your amazing donation today and stopping in to give me a hug! I thank you so incredibly much!Thank you to everyone who saw the story on the news and out of the greatness of their hearts stop in the salon to make a donation and to everyone who has donated to Tobin’s gofundme!! You all are amazing!! Thank you so much to all the news reporters reporting Tobin’s story! You all are awesome and so caring!!I 100% believe we will hit our goal to save Tobin Grace!!! We love you all so much!! Here’s a video of Tobin with her grandma yesterday!! 🥰🥰🥰🥰🥰https://www.gofundme.com/save-tobin-grace
Posted by Tobins Journey on Saturday, January 5, 2019