Theo's Challenge - Battling Batten's Disease

6 year old Theo, was diagnosed with a rare genetic disorder called Batten disease (CLN2). This devastating illness will cause a loss of motor skills, blindness, dementia and will drastically reduce Theo's life expectancy. Theo is one of only a handful of children in Canada to be diagnosed with this horrible disease, and the only one in Saskatchewan. Theo was born a healthy, happy baby and seem to develop normally for the first part of his life. At 3 years old he began having seizures and after almost a year of various testing, his family received the devastating diagnosis of Battens disease.

 

 

Theo is the first child in Saskatchewan to receive a new Enzyme Replacement Therapy (Brineura) that will stall or greatly reduce the progress of this awful disease. Every two weeks Theo receives the enzyme treatment which is a day long procedure administered through a special device in his skull. We have hope that one day soon, a permanent treatment, such as gene therapy, will be available to Theo but know that this will come at a great expense.

 

We are currently raising funds to help pay for a wheel chair accessible vehicle the family has recently purchased, as well as changes that will be required at their home to make it accessible.

 

 

 

If there is a surplus in the fund, after all of Theo's needs have been met, Theo's family would like to give the surplus to:

The Isaac Foundation, who supports family's children with rare diseases and / or

Other families who have children suffering from Batten disease.

 

 

On behalf of Heather, Mike, Nathan and Theo, THANK YOU!