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!

Facilitating Sarah-Hope through Grade 1

Sarah-Hope had a remarkable woman, Faye Amorosino, as her facilitator in her Grade 1 After the first five months with her, she wrote the following about Sarah-Hope:

Meet Sarah-Hope. 

7 years old with a sincere love for bunnies and horses.

She handles her wheelchair better than any race-car driver and although she may struggle with some daily stresses, she is very, very brave. 

She loves reading and surprises. 

When you first meet her, she speaks in an almost adult kind of way, like matter-of-fact and to-the-point.

But if she senses some genuine part in you, you may have the pleasure of hearing the quietly spoken (and sometimes sarcastic) jokes. 

Her world is different. It requires a lot more inner strength than most 7-year-olds her age. 

There are some days when I can feel her fear, and other days when I am swept into the blissful joy of an innocent child's delight. 

Sarah-Hope has been my focus for the last few months as I have taken on the role of an educational facilitator at a phenomenal 'inclusive' school in Pinelands, Cape Town. 

Sarah-Hope has been teaching me about what HOPE is. 

Our lives so often feel like one big, blurry, rushed and chaotic cloud of not-enough-time dissatisfaction. 

But we can change all of that. 

Sarah-Hope is challenging me. Daily. 

And I'm so grateful to have met her. 

So proud that I get to assist her. 

So humbled by her story. 

 

 

Adaptive surfing

This surfing adventure was offered to us through the Roxy Davis Foundation, via Warrior on Wheels:

To the amount of volunteers needed to make these kinds of opportunities possible - thank you!

Imagine bumping into Pam! What a celebration!

 

Richard's thank you note to the Roxy Davis Foundation

Dear Roxy, Ant & team

A short email to say a massive THANK YOU for including us in the Adaptive Surfing clinic yesterday.

We came to watch Sarah-Hope and Libby's cousin, Katelyn; and to scout out whether this was something Sarah-Hope could participate in next time. On the way to the Berg she started asking some very leading questions - which made me realise that she was not interested in a recce but wanted to get in the water. I was seriously worried about how this was going to play out - one parent, two kids, one in the water, one on the beach, the fact that we hadn't booked, or that both of them love water but aren't at all confident around waves.

I'm still completely floored by what we experienced.

We were welcomed, encouraged, supported and celebrated by a group of people who epitomise what it means to share the stoke. And are doing that for kids who literally wouldn't be able to access it without their incredible generosity. A special shout out to Nasiera. My girls usually take a long time to warm up to anyone new but they felt so at home. They absolutely loved it and cannot wait for the next time.

It also meant the world to me that they got to experience this together. Libby just can't get over the fact that everyone was cheering for her as she zoomed along.

On a personal level, I used to work in the surf industry (I was at Atoll Media, who published Blunt, Zig Zag and Saltwater Girl) but have hardly surfed since Sarah-Hope was born. To be in the water, with both girls at the same time, when they each caught their first wave was utterly profound and deeply healing.

I can't thank you enough.

Richard

 

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Roxy Davis Foundation Response  

 

Afternoon Richard,

Thank you for your very touching email!  

I believe most of the thanks should go to you, Libby and Sarah-Hope. The Berg Family courage and determination were key in making the afternoon such a success.   Thank you for taking a chance and joining in - Sunday afternoon again showed us that together many small actions can make a huge difference -  a group of volunteers arrived at the beach, a quick briefing and the next thing fun was being had in the waves by one and all! At one point there were quite a few passersby's who had stopped to enjoy in the magical moments.

I don't think Roxy or Ant could have wished for a better experience! We look forward to sharing many, many more with you and your family.

I'll be sure to share your email with Nasiera - your are spot on Libby and Sarah-Hope connected with her on a level I have not seen before - beyond heart warming.   

Take care and we'll see you on the 22nd of September if not before!

 

Further Discoveries about Sarah-Hope's anatomy driving mobility challenges

With the 'writing on the wall' regarding Sarah-Hope's mobility, I reached out to the Children with TAR Syndrome Facebook group. In the first five years of Sarah-Hope's life, I didn't ask to join the group - it was enough coming to terms with our story, and I certainly had no capacity to deal with other stories. Sarah-Hope's medical and therapy team knew her case well, and after burning out my research capacity during my pregnancy, I enjoyed the simplicity of just doing what I was told. 

But we hit a brick wall with Sarah-Hope's mobility. I had seen every paediatric orthopaedic surgeon in Cape Town and while I agreed with the conservative approach in terms of surgery, it was very difficult to get direction from surgeons for the physios who were wanting to strengthen Sarah-Hope's ability to stand without inflicting damage on her joints. In all fairness to the surgeons though, with such an unusual anatomy, there is little one can predict as to what the impact will be of any particular intervention.

Most of the families with children with TAR Syndrome who pursue surgery either go to Dr Dror Paley or the Shriners charity hospitals in the USA. I got in touch with Dr Paley for an opinion on Sarah-Hope. In addition to X-rays, video footage of Sarah-Hope moving, he said he needed an MRI of her knees, and 4D reconstruction CT scans of all her limbs. The MRI of her knees alone took three hours, which should have been a clue as to the complexity of her anatomy! It was quite astounding to me that no one locally had actually taken this step to find out to clarify what was happening inside these legs of hers - and it was a big blow to discover. It was confirmed that Sarah-Hope has no knee caps, no cruciate ligaments, her tibia and fibia are rotated as a start... Dr Paley recommended a complex reconstruction surgery which would have required us to be in the USA for a few months of rehab after the surgery. He didn't mention follow up surgeries but from tracking other stories, it is very likely that as the child grows, additional problems emerge which then require further intervention. So starting on a surgical route would mean it would be difficult to get off it. I was also concerned about the transfer of knowledge from the rehab therapists in the USA to local ones to sustain the work achieved in the surgery.

Family contacts helped us to get in touch with another orthopaedic doctor in the USA for an opinion - I was so well served by this wisdom: "the decision is more important than the incision". The doctor was referring to the decision to pursue surgery for a child being one that needs holistic consideration from the whole family. We were also encouraged to investigate the Texas Scottish Rite Hospital for Children. 

Going ahead with the surgery that Dr Paley suggested was not an option in terms of cost. Just the first operation / stint in the USA would require us to sell everything we own and we knew that the quote didn't include costs related to any complications that may arise in the operation which we would be naive to think may not arise. We were realistic that as soon as you start the surgical route, it is difficult to get off it. I was also concerned about the amount of time that Sarah-Hope would need to be out of school for surgery / rehab and how this would impact her schooling and our family life.

I arranged an interdisciplinary meeting with a local paediatric orthopaedic surgeon, physio and orthotist to discuss Dr Paley's report. I had to smile at the suggestion that the USA surgeon was both a "genius and manic"! We discussed that we should look to see how we could get Sarah-Hope back on her feet again, even if for just standing transfers. A standing frame would help with this, as well as braces. And so we got the ball rolling on that.

 

Beauty of SARDA

 We are so grateful for the opportunity Sarah-Hope has had to participate in SARDA - South African Riding for the Disabled. It has benefitted her tremendously, especially in terms of confidence and community.

Confidence
Sarah-Hope's confidence has increased significantly through her participation at SARDA. This goes beyond having had the opportunity to be out in the fresh air and working with an animal. SARDA is a place where something is expected of you, and you are supported in achieving it. This is not usually the case for a 'disabled’ child. The positive expectation, unique goals, warm support and subsequent sense of accomplishment has had a profound effect on her.

Working up to trotting on a horse has enabled Sarah-Hope to develop balance and stability, which is essential for her given that she suffers from a low platelet count and has no arms to break a fall should she topple over. The planned events (country challenge, end of year celebration etc) are all opportunities to display progress and to be publicly recognised for it - again something which disabled children are often excluded from experiencing. It is wonderful to see Sarah-Hope beaming with pride as she receives her rosettes.

Community
For Sarah-Hope, seeing other kids with challenges has also been important (often she might feel like the odd one out with her physical differences)... and seeing all these children working towards specific goals has been brilliant. There’s a wonderful sense of camaraderie and she has such positive role models both among the other children and the volunteer helpers.
As a family, we've been hugely grateful for seeing and connecting with other families facing challenges. This helps with the isolation we can often feel.

Without SARDA, we wouldn’t be able to make horse riding (including the adaptive measures required for Sarah-Hope) possible for her. It is an activity that is expensive and time consuming. Given the demands of children with additional challenges, families often don’t have the emotional, time or financial resources as there is so much else you are dealing with.

SARDA is a generous programme that makes it possible for children to benefit in a myriad of ways from working with horses. A huge thank you to those who make this possible!