We are #TeamTori

After we finished the last t-shirt booster, so many asked if there were shirts available that Lesa asked if we could re-open it. So, here you go!

Below is our original Booster Campaign information. Nothing has changed.

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On February 13 at 2pm, Lesa and Brennan Brackbill received devastating news.

In Lesa's words...

"The neurologist called today and said they had the blood test results already, and asked if we could come in at 2pm. We knew then that it was either great or terrible news. 

There is no question that Tori has Infantile Krabbe’s (crab-bay) Disease. The average life expectancy is two years. There is no cure. 

 Today we were told that our baby girl is dying." 

(You can read more from Lesa's blog here...
https://thebrackbills.wordpress.com/2015/02/13/the-day-our-lives-changed-forever/)

Krabbe Disease occurs in approximately every 1 in 100,000 births in the United States. This form of leukodystrophy is caused by a mutation of the GALC enzyme, causing the body to not form myelin correctly. Instead the body produces a toxin which leads to the death of brain cells and nerves.

It is an inherited disease and one or both parents could carry it as a recessive gene, but it is unlikely that the carrier would exhibit any sign or symptoms of the disease.

There is early detection/screening for Krabbe Disease at birth in some states. Unfortunately Pennsylvania, where Tori was born, is not one of these states.

This diagnosis has a devastating impact on the families that experience it. According to the Mayo Clinic "In most cases, signs and symptoms of Krabbe disease develop in babies before 6 months of age, and the disease usually results in death by age 2... There's no cure for Krabbe disease, and treatment focuses on supportive care."


(Thank you to Libby Norcross of Libbydoodle for the use of her design!)