Author Archives: Kelly Wallis

I’m Struggling with Bitterness This Holiday Season

Parenting a terminally ill child carries emotional baggage. It can be subtle or sudden and feel like an extra weight to carry around every day. The feeling of bitterness particularly resonates with me and has developed over time. I am normally an upbeat, positive person. I am generally happy…

Dealing with the Emotional Toll of Sanfilippo Syndrome

Parents of terminally ill and special-needs children experience a multitude of emotions. Our feelings lie across a wide spectrum, and sometimes we feel many emotions at once. Each person’s reaction is different, too — no two parents are exactly alike. However, I think that we all experience similar feelings at…

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…