My Daughter Has a Terminal Illness. Now What?
My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was diagnosed, I received the news…
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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Managing volatile emotions is part of being a Sanfilippo caregiver
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…
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