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Help Gabby beat Transverse Myelitis, get back on her feet and walk again

  • Our way forward

      26 October 2016

    I wondered if in my last update I wasn't quite clear about what our intended way forward is. If I wasn't and you are left unsure about what we are going to be doing with your kind donations, here is where we are at as of this evening:

    We will be purchasing a motorised Exercycle (called a MOTOmed) for Gabby as while it is passive and her own muscles aren't contracting and doing the actual work, she still stands to make some good gains with regard to getting her blood flowing And improved circulation. If later on it is established that she will get some gains from attaching an FES unit, we will look to purchase one at that time.

    To help with the cardio fitness side of it, I have asked for Acutech to provide me with a quote for a hand cycle (much like a grinder in the America Cup sailing). This will not only help with her fitness but continue to build on her upper body strength. I am still waiting for the price on that, however I expect that this will cost in the vicinity of $5,000, so total cost to be in excess of $10,000. Both of these units together will maintain and continue to build her strength and fitness, keeping her well from that perspective. Any unit that we purchase will be donated to Wilson Trust or another child rehabilitation facility when Gabby reaches the point of no longer needing it.

    For the remainder of the funds raised, I have today spoken to NeuroMoves in Australia and am about to start the application process to take Gabby there. They have a paediatric facility in Sydney which is where we have been recommended to go. They obviously don't guarantee that they will get Gabby walking again, but then again, no one will, however they do guarantee that they will give it a bloody good go. They will put together an intensive program for Gabby which is all based on weight bearing exercises all performed out of her wheelchair. It will be 1.5 hours per day, 5 days per week for a minimum of 2 weeks, however preference is the longer we stay, the better it will be. This will come at a cost of around $1,250 per week plus accommodation and living expenses, which the NeuroMoves customer care team will help us work through. The application process involves me getting medical clearance here for Gabby and NeuroMoves doing a full assessment of Gabby and figuring out her needs and whether their program could help. A ways to go, but that is where we are heading and hope to do so sometime in January (sooner if we can get the paperwork sorted).

    After that, we will see where we are at. It is important that Gabby also has some time out to do things not related to therapy and with the help of a super kind lady (I'm not sure if I'm allowed to mention her name) who has done huge amounts sourcing a wheelchair, racquet and balls, she is about to start wheelchair tennis. I've got a great feeling about this...

    So I hope that puts you at ease that your donations are going to be used for their intended purpose. The cause still is, and will always be to do everything we can to give Gabby the very best chance of beating this damn condition and getting back on her feet and the netball court again.

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  • FES Bike Trial Unsuccessful

      26 October 2016

    Knowing where to start here is difficult. Here goes anyway...

    Last week we trialled an FES Bike at home for Gabby. This was what had started our fundraising and what most of our hopes had been pinned on to help give Gabby some recovery gains, so naturally we were excited. I had the feeling that my wishes were starting to become a reality.

    The technicians and Gabby's Physio worked together to set everything up and the electrodes placed on her legs and they turned the electrical current up... And up... And up. The current was turned up to a point that was considered maximum for safety reasons, yet it had failed to stimulate any contraction in the muscles in Gabby's legs. The technician said she had never seen this happen before. These were not words that Gabby or I found comforting.

    There could be any number of reasons that it didn't work. There are medical tests that we could probably do to check Gabby's muscle function, however I actually don't see what good purpose that would serve. To put Gabby through whatever that would entail to be potentially told that her muscles are not functioning would be devastating for her (and us). We need to keep finding ways that move us forward.

    The devastastation we have felt is indescribable and the thought of having to go back to the drawing board is not what we were expecting. However, Gabby's Physio pointed out to us that while FES was not something that was going to work for Gabby (I will add yet in here, we always say "yet), it is only one tool in the toolbox, it is not all of them. Gabby could still get gains from the motorised Exercycle (without FES). It is passive and her own muscles won't be contracting and doing the work, but Her legs will be moving nonetheless which is good for blood flow and circulation and maintaining the muscle she currently has. It will unlikely build new muscle though, but I'll take the improvement in her circulation as a positive anyway. So we intend to purchase this (assuming the trial all goes well), however will not spend and additional $11,000 to purchase the FES unit that attaches to it.

    Over the last week I have been researching other options. I have been in contact with an organisation in Australia called NeuroMoves who do a lot of great work with spinal chord injury patients. I have also been in Touch with the St Louis Children's Hospital in USA who have doctors that specialise in Transverse Myelitis. Taking Gabby to Australia or USA for treatment could be an option, expensive ones I admit, but at least they are options and the 'drawing board' has something on it.

    I promise you your generosity will not be wasted. We, as a family will not give up on trying to get Gabby the best recovery possible. I am also dragging Gabby and a group of friends and family around the Auckland Marathon in 2017 to raise money for Catwalk Trust, who specifically fund spinal cord research in NZ. Catwalk are all about finding a cure for spinal cord injury so that SCI does not mean people having to spend the rest of their lives paralysed. That's something I am very keen to support and see happen in my lifetime.

    Oh for those friends and family who did not know you are doing Auckland Marathon with me next year - SURPRISE! I'll be in touch xx

    Thank you again and I will let you know how we get on down the new road of recovery that we are taking x

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  • Forever Grateful

      7 October 2016
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    I think that I have said before that 'thank you' just doesn't seem enough. Our family has been overwhelmed by the kindness that has been shown by everyone who has donated. Everyone's generosity has opened up so many other doors for Gabby. Not only can we purchase an FES Bike, we are also able to explore other rehab/treatment options that we would not have been able to look at before.

    Gabby has been at Neurophysics this week where they have been working with her to help her brain find new pathways to get messages to her legs. The normal and familiar route is currently blocked, so the brain needs to find a new route. This has involved a 2 hour session every day and she has worked really hard. She has been getting new sensations and more spasms in her legs and we are hopeful that this will give her some good gains.

    We are trialling an FES Bike in the next 1-2 weeks so purchasing of the bike is feels like it is just moments away. We naturally want to make sure that we get the right one that is going to give Gabby the best benefit, so we will work through that process. Gabby's physio at Wilson Centre has been really helpful in working through that with us and getting a whole lot of information for us as well as getting herself ready to set it all up from a physio/treatment perspective. We are all dedicated to keeping Gabby moving forward and ensuring she continues to 'just keep swimming'.

    Thank you for making this possible and for giving our family every opportunity to help Gabby achieve her goal and getting back on that netball court xx

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