Moving into a new home doesn’t change our priorities

The more accessible house will enable us to better care for our son

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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“No, we are not moving. We can barely keep our heads above water with everything going on right now. How do you think we could add in a move?” I asked my husband incredulously. What was he thinking?

This was nearly three months ago, in early March. Tim had recently been out of state for a family funeral, meaning I had been the sole caregiver for our son, Will, who has Sanfilippo syndrome. This rare genetic disorder is compounded by the fact that Will is nearly 14 years old and 5-foot-6. The physicality of Will’s care is difficult for me when my husband is out of town, but I managed. It wasn’t easy, though.

So, at Will’s next physical therapy session, I asked our therapist for pointers about how to best support him physically as I get him into bed and help him use the shower. I was hoping for more instruction on ways to protect my back while helping Will move around. Instead, it opened up a discussion regarding potential home modifications.

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“Val, he’s not getting any smaller and we’re not getting any younger,” my husband reminded me. “We always said that home modifications would be our trigger point for moving.”

I glared at him. He wasn’t wrong, but I didn’t want to admit it right then. We had planned to start looking for a new home with an extra downstairs bedroom and a more accessible floor plan back in 2019. Talks with other Sanfilippo families about not changing Will’s environment yet, followed by COVID-19 shutdowns, led us to put the brakes on our plan.

“Tim, I’m finishing my first year in my new job at a school. We’re about to enter the final stretch of the school year. There’s no way I can fit in a move! Never mind the fact that we need a house that fits very specific criteria.”

“Which is why we should just start casually looking now,” he replied. “It will probably take a while, so we can start to look and figure out what we want.”

“Fine,” I agreed. “We can look. But we cannot move right now.”

Spoiler alert: We’re moving.

Finding the perfect home

It was the second house we walked into off a very short list of “maybes.” It hit each of our requirements, including being within six minutes of our old neighborhood so that Little Sister could still swim on her swim team and take her piano lessons. As soon as I walked through the front door and saw how perfect it was for us, I actually cursed, knowing what was to come.

I’ve had so many mixed emotions since then: anxiety over the mental and physical work of moving, sadness over leaving our current house, and joy over finding a home that will allow us to continue to give Will the best care possible.

A family of four poses for a photo in front of their new house. The mom, dad, and daughter are wearing purple shirts that say "Will Power," while the son, Will, is wearing a purple Hawaiian shirt.

Will and his family smile outside of their new home, which will allow them to provide the best care for Will going forward. (Courtesy of Valerie Tharp Byers)

We will officially move at the end of May, after both kids are out of school. We’re currently trying to find extra hours each day to pack up carloads of items to move over ahead of the big move. It’s a lot to add into an already full schedule, but the slow transition is helping me.

It’s been hard to fathom leaving the house we brought our babies home to, and it’s even harder to think about the reason why. Moving is yet another acknowledgement of everything that Sanfilippo continues to steal from Will. It’s like I’m conceding another battle lost.

But then I remind myself that there is no battle, not really. Will has had Sanfilippo since the moment he was brought into being. Sanfilippo isn’t going away. It’s not what matters. What matters is giving my son the best life possible and making sure we can create as many memories together as possible. If this new house is one of the tools we need to accomplish that, then so be it. Pass me another moving box to fill.

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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