For Parents of Sanfilippo Children, Holidays Are Different
Thanks to caregivers, a columnist takes a rare vacation with her husband
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 Abby, who has Sanfilippo syndrome. These caregivers sacrificed their free time over the Christmas break to allow us to take a vacation. We are so grateful.
We are rarely able to spend any significant time away from home because Abby needs constant care and supervision. She is 27, but her rare, genetic, terminal disorder is slowly robbing her of all sorts of abilities, including speech and motor and cognitive functions.
Feeling gratitude
Although Abby has this disease, she appears to be relatively happy and healthy, believe it or not. She rarely gets any illnesses such as colds or allergies. She did get COVID-19 about a year ago, but it had minimal effects on her. This is worth noting, because Abby’s motor planning is so poor now that it is very difficult to get her into vehicles to take her anywhere.
We are so thankful that she can enjoy life and find pleasure in music and her favorite TV shows and movies. She appears to still recognize loved ones. We witnessed this during Christmastime, when she saw relatives she hadn’t seen in a while. She can still walk, laugh, and sleep well compared with many other children with Sanfilippo. And as far as we can tell, she doesn’t seem to be in pain as of now. For all of these things, we consider ourselves fortunate.
Looking ahead to a new year
Before Sanfilippo syndrome was a part of our lives, we were excited about starting a new year. We anticipated growth, new experiences, and positive changes. Things feel different now. We do look to the future, but with less hope because we know that Abby will only continue to decline.
This sounds so pessimistic, but it is an honest account of what it is like to have a terminally ill child. There is no positive way to frame what the future ultimately has in store for her. And we have no control over the rate at which this disease will continue to invade her body. The unknown sends my mind into a whirlwind, and it is hard not to imagine the worst outcome.
Most Sanfilippo children do not make it to age 27, and that alone warrants gratitude. Our hope for 2023 is that Abby will maintain her motor abilities and continue to find happiness. We will do everything we can to make that happen.
Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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