When Sanfilippo gets in the way of making memories with family
A trip to explore national parks proves too difficult for this columnist's son
As we sat in the Denver airport waiting to fly home, our 10-year-old daughter gave me a big hug. “This was the best vacation ever, Mom!” she exclaimed. “I had so much fun.”
I smiled and hugged her back but then made eye contact with my husband over her head. We exchanged a worried look and glanced at our son, Will. It may have been the trip of a lifetime for our daughter, but it was a different story for our son with Sanfilippo syndrome.
A troubling setback
Unfortunately, our gamble on Will for this trip didn’t pay off. It was rough and much more difficult than we had expected. He couldn’t adjust to the loss of a predictable routine. With the long hours of driving, unpredictable food availability due to the driving, and the switching of hotel rooms every few days, he was never able to settle in. He wasn’t sleeping well and started to have significant feeding issues again. My husband and I were at a loss. As we marveled at the beauty of the landscapes around us, we were also intensely worried. Had our amazing trip caused our son irreparable harm?
A family trip to explore U.S. national parks was met with challenges due to Sanfilippo syndrome. (Courtesy of Valerie Tharp Byers)
Our homecoming didn’t fix the situation. We had hoped that being back in a familiar environment would help, but Will still had significant feeding difficulties. We discovered that he had lost 4 pounds. My husband and I discussed the risks and benefits of feeding tubes as we spent hours upon hours retraining our 14-year-old son how to eat.
It took nearly three weeks, but we’ve taught Will how to eat by mouth again. He is eating slowly and still having some difficulties, but he is starting to gain weight back, although not as quickly as we’d like. We know we’re not out of the woods yet and continue to prepare ourselves for the inevitable continuation of the decline of skills our son will face because of his condition.
This trip reminded us yet again about how precarious Will’s health is. We want to continue to have adventures and make memories, but not at the expense of his well-being. Trying to straddle that line is maddening, but we won’t give up. We’ll find a way to keep living life with our boy.
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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