Sarah-Hope appears in Kuier magazine

 

 

 

 

 

 

 

Additional mobility devices - From Sindi to Zane

What we were learning as a family is that even though the electric wheelchair is amazing, we need a back-up. Not just for when the battery gets low, or if it needs a service when a certain little racing driver lands up knocking off certain parts of her chair in the course of her adventure...

The problem is access. 

Firstly, in order to go somewhere with the electric wheelchair you need to have your vehicle with it's ramp. The chair and battery alone is 70kg. You can break it down and rebuild it again but it still likely requires two adults to get the parts in and out of a regular boot. 

Secondly, you need a secure ramp that can take the weight of the chair and Sarah-Hope. 

Thirdly, you need the venue that you're going into to have enough floor space and spacious corners so that you can manouver around. 

But often these three criteria are not all in place. So either Sarah-Hope must be carried, or you need an easier back-saving option!

We came up with the idea of a basic ride on toy (just like the way she would use a plastic motorbike to wheel around). 

Sarah-Hope's physio, Kirsty Williams, went to extraordinary efforts to get this cow from the Eastern Cape! Her name is Sindy. But Sarah-Hope was too tall for it... so we asked a friend to give it a long neck. 

Now we just needed Sarah-Hope to buy into the whole thing... she was more into horses... so Kirsty added a mane and a long tail... and then with the long neck it became the COW-HORSE-GIRAFFE. Brilliant!

With all these devices, other children often want to jump on and ride them. This does make Sarah-Hope rather anxious as the device is effectively like her crutch - she knows that if anything happens to it she then will need to move around on her knees. 

As Sarah-Hope grew taller, and Sindy's neck couldn't be extended any further, we needed a new plan.

From the Warrior on Wheels Foundation, we met fellow special needs parents, Derek and Tracy Boshard, who started making 'freedom walkers' for children locally. Sarah-Hope wouldn't manage one of those as she can't hold her own body weight without long arms. So we asked Derek if he'd consider designing something specifically for Sarah-Hope.

He came back to us with a design for a 'freedom cart'. It has a seat and handlebars she can reach, she pushes it along and it even has a basket at the back for her special doll, Vredehoek. Being made of blue PVC piping, Sarah-Hope decided that it was a boy and he was given the name Zane. 

 

I assured Derek that what we needed was something that we could use indoors... in a large home or along a corridor etc... the buildings that we couldn't get a wheelchair into. But Sarah-Hope found it so transformational that she soon started taking Zane outdoors. It took her a moment to get used to the vibrations on her little hands as she traversed bricks and tar... but falling in love with movement and the joy of being able to move her body around, she got used to it. 

 

I don't think Derek was prepared for these videos though:

Zane seriously made his way into Sarah-Hope's heart. We planned his one year old birthday celebration and even invited neighbours for the occasion. There were decorations, gifts and cake. We had to take a moment and acknowledge how Zane had changed Sarah-Hope's life. She made a speech, but we didn't sing because Zane is a bit shy. 

We have had to do some repairs and maintenance on Zane but that is the genius in how he was made... with modular and inexpensive parts. So hoping this guy continues to be part of our life going forward!