Author Archives: Kelly Wallis

Feeling Isolated While Parenting a Sanfilippo Child

Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face. When I thought my daughter Abby had autism, I didn’t join a support group or seek out other moms of children with autism. I felt…

Parenting Siblings with Different Needs

Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs? My oldest daughter, Abby, has Sanfilippo syndrome. Her sister, Emily, is unaffected. Emily is incredibly smart, beautiful, kind, and…

Please Ask Me About My Child

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better. But if you have experienced a sad event, you can’t avoid it. You wake up thinking about it, and it is…

My Daughter Has a Terminal Illness. Now What?

My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was diagnosed, I received the news that I had cancer, so my family was already in “adaptation” mode. We had shifted to…

My Daughter’s Journey to a Diagnosis

My daughter Abby was 22 when she was diagnosed with Sanfilippo syndrome. We were devastated. Like any other significant event, things are now classified as “before” or “after” the diagnosis. Abby was somewhat self-sufficient as a child. She could eat by herself and get dressed with some assistance. She…