Help Gracie get to Holland for Medical trial!

Gracie is a beautiful 11 year old who suffers from a rare Neurological condition called Vanishing white Matter Disease , a type of Leukodystrophy. Worldwide there are only around 300 known cases .

Devastatingly, in July 2019 , Gracie’s older brother Noah passed away aged 12 years old from the same condition. Vanishing White Matter Disease is a life limiting disease with life expectancy only up to teenage years.

Over the years Noah and Gracie have needed to go to Holland for specialist treatment , in Holland a world renown Professor Van der Knaap , has been working tirelessly to find a cure for all children suffering from this cruel disease. There is currently no cure for VWM but this year we have had somE HOPE , the team in Holland have been working on a treatment and have just begun the first Clinical Trial of its kind in the world . The have Discovered a drug which may help with slowing the progression of the disease down ! It’s more than we could ever have imagined and believe if it works could be the miracle we and everyone else has been praying for !!

Gracie has the opportunity to go to Holland around October time to see if she meets all

Of the criteria to participate in the trial !! We would possibly need to stay in Holland for up 7 weeks , but if there was a chance it could help Gracie then it would be worth it !

https://www.vumc.com/departments/center-for-children-with-white-matter-disorders/guanabenz-trial-for-vanishing-white-matter/a-first-trial-of-guanabenz-in-vanishing-white-matter.htm