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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 equipment. When disabled children reach adulthood, caring for them can become…
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 it’s rare and terminal, I feel extra worry. I’ve written…
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, interact with others, and independently perform many tasks. This disease is…
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…
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…
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