A solution to the heavy lifting required in Rett syndrome care

The theme of today’s column, in which I will solve one of the most vexing problems facing caregivers of children and adults with Rett syndrome, is “I’ve got your back.”

Last week, the International Rett Syndrome Foundation hosted one of its “RettConnect” Zoom calls, this one billed as “Dads Talking Rett.” (It was just for fathers of kids or adults with Rett syndrome.) Some of us who joined the call have older Rett syndrome dependents; my daughter Abby is 29. Some are newer to this club that no one wants to be in; one father of a 2-year-old just got the diagnosis weeks ago.

We talked about finances. We talked about renovating our houses to accommodate someone with a disability. We talked about our child’s experiences with the Rett syndrome treatment Daybue (trofinetide). We talked about how we deal with rude stares and nasty comments when we take our kids out in public.

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And we talked about the weight of having a Rett syndrome child. Not the psychological weight. The actual weight. One of the dads offered a piece of advice that I’ve been thinking about ever since the call. “Protect your back,” he said.

It was advice born of the fact that, while most parents spend only a year or two lugging their infant or toddler around before the kid becomes self-sufficient, for a Rett syndrome parent, the lifting and tugging never end. It’s especially burdensome for parents of children who are not mobile; getting the kid into and out of a wheelchair, into bed or the shower, and so on is a workout, and the back muscles do most of it.

I’m a dad, not a powerlifter

I’m fortunate in that Abby has always walked — not very well, but she can get across a room or up a flight of stairs, which is important in our house because the bedrooms and full bathrooms are all on the second floor. Even so, making it through the day with her involves a lot of lifting to hoist her onto her bed or into the minivan or whatever. And since my wife, Donna, has had three not particularly successful spinal surgeries, all the lifting, bending, and twisting fall to me, or, more specifically, to my back.

The worst is getting her out of her beloved swim spa, where we spend an hour every day that the weather allows so she can get some exercise. She’s perfectly capable of walking up the spa’s three steps to get out by herself, but she never wants to get out; she’d spend all day in there if allowed. So I have to resort to a deadlift to extract her from the spa. That was manageable when she and I were younger and she was smaller, but now she’s 115 pounds, and I’m in my 70s. Powerlifting is not my preferred sport.

I know that there are Hoyer lifts, stair lifts, and other gizmos you can buy to get people with disabilities into, onto, up, or out, but these aids aren’t cheap, and our house is already overstuffed with Rett-related things. More to the point, we wouldn’t need cumbersome lifting apparatuses if somebody would just develop a Personal Anti-Gravity Device. I envision this as a unit the size of a cellphone that, when activated, would suspend the force of gravity around the Rett child long enough to elevate the kid three feet and into bed or the car.

I know the technology to make such a device already exists because I’ve seen the movie “Apollo 13,” in which Tom Hanks, Bill Paxton, and Kevin Bacon float around in their presumably fake, earthbound spacecraft. And that movie was made in 1995. If we were able to get three full-grown actors to defy gravity 31 years ago, we can certainly levitate a 115-pound kid with Rett syndrome out of her swim spa.

We’ll want to make sure all the bugs are out of the Personal Anti-Gravity Device before we put it into general use, of course. I’ve seen those news stories about self-driving cars that go rogue. We don’t want Abby flying off into outer space when we’re merely trying to get her into her shower chair.

But rigorous testing should take care of that. So somebody please get on this. I’ve done the hard part, i.e., coming up with the concept. Now, Anonymous Inventor, all you have to do is create it. Hurry — my back can’t hold out forever.

Note: Rett Syndrome News is strictly a news and information website about the disease. 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 Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.