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

On 13 June 2016, Gabby’s life changed in a way that none of us ever imagined it would. She was given a rude awakening to how bad things happen to good people and went from an active, healthy 12 year old girl playing representative netball one day being paralysed and losing all function and movement below her waist the next. We were to find out later that this was an auto-immune response triggered by the cold she had 2-3 weeks prior.

An MRI and Lumbar puncture diagnosed her with Transverse Myelitis, a condition that is essentially inflammation of the spinal cord resulting in a neurological disorder, causing paralysis below the level of the inflammation.

I deliberately avoided consulting with Dr Google at the time because I did not want to read anything that was going to make us lose hope of a full recovery. Dr’s were doing their best to manage our expectations, telling us that while it was early days and prognosis was unknown as it varies from person to person, 30% make a full recovery, 30% make a partial recovery but may be left with a spastic gait and ongoing weakness and 30% make no recovery at all. We were told that the longer Gabby takes to regain function, the more concerned they would become and we would need to consider that life in a wheelchair for Gabby might be the outcome. I’m sure Google would have done a better job at cheering us up and building hope!

The course of treatment that is required for this condition is not for the faint hearted and not something any parent wants to watch their child endure. Gabby spent the next 5 weeks in Starship having the full course of treatment. It was 5 weeks of needles, catheters, central lines, nasal gastric tubes, suppositories, blood tests, poking, prodding, physio and lots of frustration, fears and tears. She did everything that was asked of her, without question despite the pain, nausea and fear of the unknown. She did not ask for anything back, she just did as she was told. There were times when I had to face off with ED Dr’s who wanted to take the quickest (and what felt the most inhumane) route to suit themselves rather than considering the girl on the other end of their procedure. I was sure that any moment, they were going to send the men in white coats to take me away, but then I wasn't out to win any popularity contest!

We came out the other end of treatment and she was then transferred to the Wilson Trust Child Rehabilitation Centre, which has ended up being a further 9 weeks of intensive physical therapy. Their job was to build on the strength that Gabby already had in her trunk and upper body and not so much on getting inactive parts of her body (her legs) to work. They also worked on her ability to function in a wheelchair and learn to do things for herself so she can be somewhat independent. This also included re-training her bowel and how to self-catheterise as this condition has taken away her bladder and bowel control, something we hope will return with recovery.

From 16 September (some 13 weeks later) Gabby gets to finally go home however she will continue to be an outpatient at Wilson Centre, still undergoing physical therapy.

This can’t be it though there must be more that we can do to hurry this process along. I have spoken to Gabby’s physios, I've connected with the Transverse Myelitis Association and have been in contact with several people who have Transverse Myelitis. They all advised that ongoing physical and occupational therapy, hydro-therapy and also the use of an FES Bike could help recovery. FES is Functional Electrical Stimulation and put simply, it uses pulses of electrical current to stimulate nerves, making muscles contract, getting them doing the work they are supposed to be doing, even when the patient can’t actively or voluntarily move them. I have read cases where regular use of an FES Bike has helped both adults and children with spinal cord injury increase muscle strength, reverse muscle atrophy (wastage), increase and maintain bone density as well as increase cardio fitness. In some cases that I have read, it has woken up the sleeping nerves and assisted in the return of voluntary function to paralysed limbs. All people I have spoken to that have been dealing with Transverse Myelitis are still getting signs of recovery years after diagnosis and all say that the FES Bike is part of their daily rehabilitation plan. They attribute part of their successful recovery to this piece of equipment.

We have investigated a number of options, however the only option left is to raise funds to purchase one for home. Given the benefits that it could have on Gabby’s recovery along with her continued physiotherapy, it is considered worth doing. When Gabby is in the position of no longer needing the FES Bike, the intention is to donate it to Wilson Trust or another relevant child rehabilitation facility so that other children can access the benefits of this therapy.

The cost of a unit is in the vicinity of $17,000-20,000, which is not affordable for us. I resigned my job early on in the piece so that I could give Gabby and her recovery my full attention. I am confident that once we get Gabby on that bike, we will see so much improvement.

As any family would want, we want to give her the best chance of getting her life back; walking and playing sports again, fulfilling her dream of becoming a Silver Fern and at the 3 month point, we are at a critical stage of her recovery. If there is not much more recovery over the next 3 months, the road will be a lot tougher and longer for her. We are not ready to accept that Gabby will not get the recovery she is working so hard for. There is still too much left to try. If Gabby were to ask us the question later on in life if there was anything else that we could have done, we have to be able to tell her we tried absolutely everything that was available to us at the time.