Shanade Jooste

Late Infantile — CLN2
Birth Date: 11/14/1995
Deceased Date: 4/26/2003
Location: Pretoria, South Africa

How old are your family members diagnosed with Batten Disease?

When were they first diagnosed?

What are the three biggest challenges you face each week?

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

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