Get regular updates to your inbox.
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 for my daughter Abby and accounting for her needs. There’s the ebb and flow of happiness…
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 nothing you can do about it. Maybe it affects your emotions,…
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 also worsening, and she needs help when walking to ensure she…
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 the disease certainly takes its toll on the body quickly. However,…
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 in 2015, and Abby’s was in 2017, so I’ve had several…
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 known this friend for many years. We attended middle school through…
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 the new year will bring. During the holidays, there is an…
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, as they’re reminded of loved ones who are no longer here…
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 attended with their families. Several of us had connected via Facebook…
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 from parents on raising children who have it. As a parent…
Get regular updates to your inbox.