For Many Sanfilippo Families, Summer Is Emotionally Challenging

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by Emily Wallis |

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I’m a teacher, so the word “summer” invokes thoughts of relaxation and letting go of responsibilities. During summertime, many people take advantage of the time off and go on vacation with their families or do other fun activities. But families who are affected by Sanfilippo syndrome never have a “normal” summer break.

My sister, Abby, has Sanfilippo syndrome and has lost many of her basic life skills. She requires constant supervision and assistance. Additionally, my mom’s cancer recently returned, and we’ve been told that it’ll likely never go away.

I don’t live at home with Abby and my parents anymore, but I’ve been spending time there this summer, helping with Abby’s needs as my mom receives chemotherapy treatments every other week.

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This week, we were supposed to travel to Los Angeles so that Abby could see doctors as part of a clinical trial to test the effectiveness of Kineret (anakinra) as a therapy. But due to Abby’s declining mobility and my mom’s condition, we decided not to go.

Selfishly, this devastated me, as it was the closest I was going to get to a family vacation. We had planned to stay for a few days, and I was looking forward to going somewhere as a family.

I felt some relief, though, because traveling with Abby is stressful. With her limited mobility, getting her on and off a plane was going to be difficult. Airplane bathrooms are really small for adults who need assistance. And with the few words she has left, Abby can be a talkative traveler! I was thankful to see that stress lifted from my parents’ shoulders.

Yet it’s difficult to log on to social media and see pictures of my friends’ beautiful summer vacations. Feelings of jealousy come naturally when I think about the vacations my family should be taking, but can’t. It’s easy to wonder, “Why me?”

I’ve written before about letting Sanfilippo “win,” and I have been letting Sanfilippo and cancer “win” for a while now. The summer months and Christmas season are incredibly hard for families affected by diseases like Sanfilippo syndrome. Abby’s mobility has declined to the point where just getting her into a car is challenging. She also can’t sweat, making it impossible for her to be in the Texas heat for more than a couple of minutes.

If I were to offer advice to those who aren’t facing health challenges, I would say to never take summers for granted. Acknowledge each and every little thing your family can do and be grateful. I’m so grateful to have a family that expresses such unconditional love. I guarantee that the Wallis family will find joy this summer in simply sitting at home and watching a Disney movie.

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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