Parenting a Sanfilippo Child
— Kelly Wallis

Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more. My oldest…

March is here, my least favorite month. My mother passed away on March 29, 2020, and I’ve hated this month ever since. Because she passed at the end of the month, I’m forced to…

Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the…

The emotional roller coaster that accompanies Sanfilippo syndrome can be bumpy at times, and I’ve been feeling the ups and downs more strongly lately. I’m speaking of my extremely volatile emotions when caring…

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…

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…

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…

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…

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…

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,…

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…