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 Sanfilippo syndrome, which sometimes is called “childhood Alzheimer’s” because the symptoms…
Parenting a Sanfilippo Child – a Column by Kelly Wallis
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 do this because we had caregivers at home for our daughter…
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 find myself caring for her while she is here but also…
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, seeing all of the pictures of happy families actually makes me…
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 of special needs and circumstances would glance into a crystal ball…
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 family, can also be extreme. Then there is education and advocacy.
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 try not to sweat the small stuff. This is partly due…
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 need a break. I have an inoperable tumor right next to…
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 upon personal experiences, making it mostly subjective. This should give us…
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, these individuals often pass away either before or during their teenage…
Recent Posts
- Bone marrow transplant helps hand-eye coordination in Sanfilippo child
- The support system that allows my special needs child to thrive
- Enzyme therapy directly into the brain tested for Sanfilippo type D
- I’m finally seeing a therapist, 3 years after my daughter’s diagnosis
- Tralesinidase alfa ERT for Sanfilippo type B children put on fast track
- Educating others about Sanfilippo syndrome, one bite at a time
- Teen’s acute psychotic disorder leads to Sanfilippo A diagnosis
- Feeding our toddler with Sanfilippo syndrome can be stressful
- It’s hard to stay positive when Sanfilippo is so cruel
- Heart condition SSS found in Sanfilippo patient for first time