My Daughter Continues to Surprise Me

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by Kelly Wallis |

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This is an update to my last column. When we left off, my family was about to leave our home in Houston, Texas, and fly to California, where our daughter Abby is a participant in a clinical trial.

I described my anxiety about flying with Abby and all the hurdles we’d have to jump over to reach our destination, including navigating an airport during a pandemic, taking the actual flight, and interacting with the general public.

I’m happy to report that Abby did great on the trip! She adapted to her surroundings with ease, and she didn’t appear anxious most of the time.

She did have an accident on the plane ride there, but her caregiver, Aly, and I handled it the best we could, and the flight attendants were so gracious about it. Also on the plane, Abby was somewhat loud at times with her joyous squeals when she transitioned into her exceedingly happy mood, but it didn’t seem to bother those around us.

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While visiting with the clinical trial team at the lab, Abby received her first shots of the trial drug. We visited in person to ensure that Abby didn’t experience any negative side effects, and my husband, Jeff, and I learned how to administer the shots once we were back home.

Abby hardly flinched when she received the shots, and she had no negative reactions, so that portion of the trip was also hugely successful.

Clinical trial visit | Sanfilippo News | Abby receives her second dose of the therapy being administered for a clinical trial in California.

Abby receives a second dose of a clinical trial therapy. (Photo by Jeff Wallis)

The best part of the trip was probably eating out in Torrance, California, at a yummy gastropub. The food was delicious, and we had just finished our first visit with the clinical trial team, which was a long, eight-hour day. What made the dinner so special, though, was having Abby with us.

Clinical trial visit | Sanfilippo News | Abby smiles while sitting at a table in a restaurant with her family in Torrance, California.

Abby and her family visit a gastropub after a long day with members of a clinical trial she’s participating in. (Photo by Jeff Wallis)

Jeff and I rarely go out to eat anymore because Abby is almost always with us. We occasionally get to go out to a restaurant if either her sister can watch Abby after she’s done working or if Aly keeps her overnight.

We have avoided going to restaurants (or almost anywhere, honestly) with Abby because of the uncertainty about how she would do away from home. There was a possibility she would have an accident or wouldn’t sit in her seat at a restaurant. (She used to get up and pace constantly, though that behavior has faded greatly.) But the biggest reason for not taking her with us was our fear that she would be anxious about being in an unfamiliar environment.

This trip showed us that Abby is OK with going out with us. She did not seem anxious, and she was quite amenable while we were away from home. This was evident at the restaurant, and I cannot stress enough how much this lightened my heart and gave me hope. Hope that Abby can go places with us more often. Hope that she no longer feels nervous about being away from home.

I mentioned this in my last column, but I truly believe that Abby’s cognitive skills have declined just enough that she is unaware of the fact that she should be anxious. It is as if she has an invisible shield to protect her, and I am thankful for that.

The next time we travel to California will be next July, and we will definitely fly again. We are even talking about making it somewhat of a vacation for us all. Imagine that — a vacation that includes Abby. What a beautiful notion!

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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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