Parenting a Sanfilippo Child
— Kelly Wallis

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, with Sanfilippo syndrome. Since…

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 to be able to speak,…

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 a rare disease called…

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. We were only able to…

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, a rare, terminal disease. I…

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 a joyous time for most,…

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 of people with all sorts…

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 the entire family, including extended…

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 not a worrisome mother; I…

My cancer has returned. My schedule is filled with chemotherapy and doctor appointments again. Currently, I receive chemotherapy infusions every other week, and my understanding is that this will be my life going forward until I decide I…

We do not live in a world of absolutes, a world of only black and white, right or wrong, good or bad. Instead, there are mostly shades of grays, or different versions of the truth. Each version is based…

Sanfilippo syndrome is a rare, genetic disease that typically presents itself in children when they are either toddlers or adolescents. Children with this disease commonly exhibit hyperactivity, cognitive decline, sleep problems, diarrhea, and declining motor skills. Unfortunately,…