Feeling disconnected from my daughter as Sanfilippo progresses
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…
Parenting a Sanfilippo Child
— Kelly Wallis
Kelly Wallis lives in Houston, Texas. She is a music therapist who works with the elderly population, and also serves as the organist for her church. She lives with her husband of almost 30 years and her daughter Abby. Abby was diagnosed at age 22 with Sanfilippo syndrome in 2017. Sanfilippo is also called “childhood Alzheimer’s” because it presents similarly to dementia. Abby has an attenuated form of Sanfilippo, meaning it is slower progressing. She writes alongside her other daughter, Emily, about hardships endured as a caregiver with honesty and humor.
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Honoring — and missing — my mother 5 years after her passing
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…
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