For Our Family, Independence Means Our Angel Can Walk Outdoors

Independence is surely one of those things that can be taken for granted. In the U.S., we celebrate our freedom on Independence Day, July 4, but this time of year also makes me think about the independent strides of my 11-year-old daughter, Juliana.

Made for walkin’

Juliana has Angelman syndrome, and one of its effects is delayed, unstable, or absent walking abilities. Angels generally begin walking between the ages of 3 and 5.

Juliana hit her stride just in time for her fourth birthday. It really did happen as haphazardly as friends said it would. One day while at Home Depot, Juliana took off and started walking toward me while I was talking to an associate about supplies for a project. What a surreal and unexpected moment.

Today, we are expanding her comfort with walking. Juliana is walking well and has completed three children’s fun runs, which are events designed for enjoyment rather than competition. Her Angel gait is nearly gone, and yes, she runs, too.

An unexpected project

Transitioning to different surfaces and levels is still a bit tricky. So, we are always looking for ways to help her move more easily. Because we spend a lot of time in our backyard, we needed to make walking out the back door easier for Juliana.

The initial idea was to have a small ramp built next to the back door. Consequently, because we were sheltering due to the pandemic, it was impossible to get quotes from contractors for the work. This was a good thing, because we eventually modified the ramp plans into something simpler.

Fast-forward to this spring. Although I had thought about it, I wasn’t looking forward to getting quotes or managing the work for the project. Luckily for me, my husband, Lamar, casually mentioned to our new neighbor and DIY rockstar Ben that he wanted to build an access wedge, which is a shorter version of an accessible wheelchair ramp. The wedge would make it possible for Juliana to gradually walk down to the ground.

Having a railing is a must, which is why we needed something custom-made to fit our house.

My husband’s casual comment happened around April or May. Then, on a Wednesday evening in June, my husband told me that Ben would be coming by the following Saturday to talk about building the wedge.

Ready, set, wow!

When Saturday rolled around, Ben showed up as planned. We talked about the wedge, and he started to process it all. Then things kicked up a notch, and we quickly progressed from talking to doing.

Ben asked for paper and a pencil to make a sketch. We joked about some of the formulas he used to do his calculations, and my husband and I were baffled by his quick processing.

In minutes, Ben produced the following awesome sketch of Juliana’s new transition wedge. I was speechless.

Ben’s quick sketch of Juliana’s transition wedge. (Photo by Sabrina L. Johnson)

When I told Ben we would plan around his schedule to work on the wedge, he replied, “I’m free today.”

“We’ll take it!” I enthusiastically responded.

In a flash, Ben and my husband headed off to Home Depot. Soon, they were back with supplies and were ready to work.

Not my kind of DIY

Although my husband was there to help, building things like this is in Ben’s wheelhouse. Because Ben has a great workshop in his garage, they set up shop there to work on the project.

I don’t know how long it took. But soon enough, I saw the two of them carting over Juliana’s new wedge in our wheelbarrow. Because it is so heavy, Ben built the large portions at his house. After that, they assembled the remaining sections on our patio.

Smiling as he works, Ben assembles the wedge pieces. (Photo by Sabrina L. Johnson)

Lamar and I are not newbies to DIY projects, but Ben’s handiwork made us look like preschoolers with blocks. The shell of the wedge was set up and in place in no time. The finishing touches, including the safety rails, were completed by that Sunday.

Celebrating good times

Many people will be eating barbecue and shooting fireworks this Independence Day. I’ll be celebrating the liberties I enjoy as an American, too. But there’s another type of independence we’re celebrating: Juliana’s improved transition from our house to the outdoors. Independence to safely walk outside? Big score.

A priceless pose on the finished wedge. From left, Lamar, Ben, and Juliana. (Photo by Sabrina L. Johnson)

We won’t shoot off fireworks in honor of the wedge. However, each time I see it, I smile at the nugget of independence gifted to Juliana through our neighbor’s generosity and skill. May her walking freedom continue unabated.

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Note: Angelman 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 Angelman Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.