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…
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 important. They’re vital in allowing families to rest and recuperate. Abby…
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…
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