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Thank you for taking the time to learn about Tobin’s Journey.

We have provided some helpful links regarding Canavan disease.

We would appreciate it if you could donate or share to help save Tobin Grace. 

 

If you would like to have your Canavan story featured as well, please email canavan.disease.sucks@gmail.com.

Sharing Tobin’s story, and donating to help fund the trials, can help to spread awareness about Canavan Disease. Please join our fight for this ultra-rare progressive genetic disease.

You could be the person that shares this information with the right set of eyes. You could be the right set of eyes. Hit DONATE, and BE THE RIGHT SET OF EYES!

Anything you can donate helps us get closer to our goals of helping to fund the development of a cure for Canavan Disease.

Hitting Share helps spread awareness, which is just as vital as donations.

Tobin thanks you!

Please keep all comments respectful, trolling will not be tolerated. Spam comments will not be tolerated either.

 

Social Media

Here’s our recent posts on Tobin’s Journey:

2 days ago

Tobins Journey

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

paypal.me/pools/c/8gxg2rRVM7

www.gofundme.com/save-tobin-grace
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2 days ago

Tobins Journey

It’s been a little over 2 weeks since Tobins been in her stander we wanted to give her Gtube time to heal!!

In 2 weeks Tobin’s grown so much I had to adjust her stander so she would fit in it 😳

Tobin was able to tolerate it for about 20 minutes. I tried keeping her occupied by playing with toys and her awesome Zvibe from ARK Therapeutic. She loved the vibration on her new tooth that’s coming in!!!

Our goal is 10 hours in the stander in a week 😳 it’s gonna take sometime of getting her use to it but I’m sure she’ll be fine in no time!!

#tobinstime #curecanavan #canavandisease #stander #squiggles #Zvibe #arktherapeutic #gtubetoddler #specialnotneedy #abilitiesnotdisabilities
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3 days ago

Tobins Journey

From screaming most the afternoon to laughing at her daddy at night!!

Tobin definitely loves her daddy!! Isn’t her laugh the greatest thing ever!??

#tobinstime #curecanavan #canavandisease #sohappy #stillteething #alwayshappyatnight #specialnotneedy #abilitiesnotdisabilities
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3 days ago

Tobins Journey

Tobin could use some positive vibes!!

She hasn’t been happy at all today! We were trying everything we could think until I felt in her mouth and she’s getting one of her top molars 🦷!! Teething is not fun!! Hopefully this tooth comes in fast and she gets relief soon!! 😭

#tobinstime #curecanavan #canavandisease #molarssuck #teethingsucks #teethingtoddler #shesnothappy
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Here’s some of our recent pictures:

This Song was written by Nicole Miranda and sang by Brooke Harmer:

I am so thankful for the people in our life’s!! ⚠️grab your tissues⚠️This song was written by Nicole Miranda and sang by Brooke Harmer!! Thank you two so incredibly much!! It’s truly amazing 🙌🏻Please donate at: https://www.gofundme.com/save-tobin-grace

Posted by Tobins Journey on Thursday, January 3, 2019

 

THANK YOU FOR TAKING THE TIME TO LEARN ABOUT TOBIN GRACE.

THANK YOU FOR HELPING TO RAISE AWARENESS AND FIGHT FOR A CURE FOR CANAVAN DISEASE.

WE APPRECIATE YOU BEING PART OF OUR VILLAGE!

TOGETHER, WE CAN!