Parenting a Sanfilippo Child
— Kelly Wallis

I recently attended the ADVANCE 2023 virtual conference about Sanfilippo syndrome, which provided a wealth of information about the disease: reports from researchers regarding experiments and findings, news of potential clinical trials…

Our family recently gained a second caregiver for my daughter, Abby. Now we have two women who care for Abby and help provide respite for my husband and me. For families who have disabled…

Raising a disabled child is difficult. They require more help to be successful in the world. They may need something as simple as extra time to complete tasks or something much more involved, such…

Raising a child inherently involves worry, and many parents stress most about their children’s well-being and safety. Some parents have more reasons to worry than others. I, for instance, have an adult daughter, Abby,…

In 2017, my daughter Abby was diagnosed with Sanfilippo syndrome, a rare, terminal disease. It’s sometimes referred to as “childhood Alzheimer’s” because the symptoms are similar. As a small child, Abby used…

Rare Disease Day on Feb. 28 is an excellent opportunity to promote awareness of diseases that often receive less attention, research, and funding than more commonly known ones. My daughter Abby has…

My husband and I just returned from a wonderful Christmas vacation away from home. We enjoyed time with friends, relaxed, and took advantage of the opportunity to do what we wanted for several days.

Caring for a loved one with a terminal illness is difficult. Not knowing the details or the timing of their passing causes so much anxiety and fear. My daughter Abby has Sanfilippo syndrome,…

As I write this, October has come to an end, and children are fully back in the swing of school. Social media is filled with photos of Halloween costumes and fun. While it’s been…

I sometimes wish I could see into the future. Would knowing the timing of events to come help me plan for them? It’s all about preparation. I surmise that plenty of caregivers and parents…

The rare disease community faces many challenges. Medical costs, caring for an affected family member, and getting them to doctors’ appointments are only a few. The emotional toll the disease takes on…

Raising children is a big responsibility. Parents experience so many emotions while rearing children — joy, sadness, frustration, gratitude, fear, and more. So many things can go wrong. So many reasons to worry. I’m…