Parenting a Sanfilippo Child
— Kelly Wallis

Have you ever sat on a plane stuck on an airport runway for an extended period of time? In that scenario, there’s a delay of some sort, and you just have to sit there and wait it out. There’s…

My oldest daughter, Abby, has Sanfilippo syndrome, a rare, genetic disorder sometimes referred to as “childhood Alzheimer’s.” This horrible disease has taken away almost all her speech and much of her cognitive ability. Her motor skills are…

My 28-year-old daughter, Abby, has Sanfilippo syndrome. It’s a rare, terminal, genetic disease that is often referred to as childhood Alzheimer’s because it affects the body similarly. Most children with Sanfilippo pass away by their midteens, so…

I revealed in my column last month that I carry around a large amount of emotional baggage. Most of it is related to me having cancer and my oldest daughter, Abby, having Sanfilippo syndrome. My diagnosis was…

I recently had the fortunate opportunity to travel out of state to visit a dear friend. I have a disabled daughter who requires constant care and supervision, so it was a nice, yet brief, respite for me. I’ve…

Starting a new year is exciting. It’s a time of anticipating possibilities, potential, and new beginnings. Christmas is behind us, and we start over. All the hastiness of the holiday season has slowed down, and we now contemplate what…

For many people, the holiday season is a happy, joyous time of year. It’s typically busy, as most of us prepare for family and friends to gather and celebrate. For others, though, this period can be sad and difficult,…

My family recently had the pleasure of attending a gathering sponsored by the Cure Sanfilippo Foundation, a nonprofit that leads the charge in research, advocacy, and support for those affected by Sanfilippo syndrome. Eight children with Sanfilippo…

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 and therapeutic advancements, and tips…

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 children, caregivers are exceptionally…

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 as wheelchairs or other mobility…