The Thurston Family

How old are your family members diagnosed with Batten Disease?


When were they first diagnosed?

June 2016

What are the three biggest challenges you face each week?

There are too many
The memories versus the reality is the most challenging. Remembering the hopes and dreams we had for our daughter’s future and now all we wish is that she could talk, even just one word, but nothing, there is no sound.
The biggest challenge is fighting the thoughts in your head – “is this the day we lose our daughter”?

What advice would you give to a family with a newly-diagnosed family member?

Stay strong, it will be a long journey ahead. Cherish each memory.

Do you have a favorite quote or memory of your child that you’d like to share?