Today, June 9, is International Batten Disease Awareness Day.
Batten disease is extremely rare. My cousin’s son, Theo, is possibly the only child in Saskatchewan living with CLN2. In 2019, there were only 6 children diagnosed in Canada. Please spread the word about Batten disease.
“Theo is one of the first and the only living person to be diagnosed with Batten CLN2 in Saskatchewan. With a population just over a million, that makes him one in a million. He is the most recently diagnosed of 14 kids in Canada. He will be the 6th child in Canada to receive treatment with Brineura. We are told that treatment will stall progression of his loss of motor skills and language skills. We are also told that it may help control his seizures. The other children receiving treatment are in BC, Manitoba and Ontario. I’m very pleased that our province of a million is also able to offer the help our son needs.”
I have been making hats, with the majority of the proceeds going directly to Theo’s Challenge :
- $25/adult hat;
- $23/child hat; and
- $21/toddler hat.
Available in a variety of style options:
- Messy Bun Hats feature a high quality elastic band in the top for your long hair or bun to stick out; and
- Classic closed top
The beautiful cherry wood accent Theo buttons have been made and generously provided by Project Carve
- 2 wooden button style features the double ridge accents; and
- 1 wooden button option is a basic design.
Hats will be custom made to your specification.
Be ready for winter, and support this great cause – To place an order, please follow this link.
THANK YOU FOR YOUR SUPPORT
I am extremely pleased to share that as of today, I have raised a total of $763 that has gone directly to Theo & his family to assist with his care.
