(My son) Kyle's Wish to Walk

Rory Fitzgerald · September 22, 2018

There are a few lads on here that will know this and I suspect, alot will not. My youngest son has Cerebral Palsy and is Spastic Diplegic (tightness of leg muscles) meaning he is in a wheelchair. His full story is in the 'spoiler' for those that want to read but the essence is the following - there is a surgical procedure called SDR that cuts the misfiring nerves in the spine and permanently severe any link with the brain. This prevents those misfiring signals from reaching the legs and allows the good nerve/muscle combo to work without contradictory signals. This reduces the spasticity. However, our health system in Ireland won't refer him for surgery in the UK (its not carried out in Ireland). The Irish have been evaluating our children since 2012 as this is the year the UK started carrying out the procedure. My son would not meet the criteria for this surgery in the UK.

However, the surgeon (Dr Park) that pioneered this technique is in the US. He has been doing it since 1991 and the neurosurgeon in Leeds that is the UK's expert went to Missouri to work under Dr Park. After resistance and rejection at home, we applied to St Louis Childrens Hospital in Missouri to get the opinion of the best mind in this field given he has successfully operated on over 3,000 children to get them out of their wheelchair and walk.

The application consists of MRI, latest hip and spine x-rays, a detailed application form with medical history and a series of videos to show the level of mobility. Kyle as accepted in July. We need to raise a huge amount (£100,000) and I have set up his social media campaign. Like all such campaigns, it will be the family, friends and close community that will get us there with our fundraisers etc. However, if you can get on and "Like and Share" his Facebook Page it could help spread the word further.

As an absolute outsider, if someone on here has a link to the club and get me a signed ball/shirt to auction/raffle would be an absolute bonus.

https://www.facebook.com/SDR4Kyle

From Despair to Hope.....

......Kyle’s Wish to Walk is the culmination of 4 years of hope & heartbreak but ultimately the start of a journey towards improving his quality of life.

Kyle was born on 28th December 2012, 6 week premature. As the months went by, he missed the key milestones. He could not sit, was not able to crawl and consequently standing and walking were beyond him. After a series of stressful tests, including an MRI and EEG, it was finally established in June 2014 that there was damage to the white matter of his brain known as Periventricular Leukomalacia (PVL) which causes Cerebral Palsy. Kyle's form of Cerebral Palsy is Spastic Diplegia. The periventricular white matter sends nerve impulses that controls motor function and spasticity. Kyle's disability affects his legs with increased muscle spasticity (an involuntary contraction causing searing pain). The diagnosis was devastating - he would be wheelchair bound for life.

Through the internet and social media just like Facebook, we found out about Irish families who had travelled to America for a surgical procedure known as SDR. This surgery aims to significantly reduce spasticity and allow the muscle’s to contract & flex more normally and greatly improves the prospect for increased mobility.

This surgery is not performed in Ireland. A multidisciplinary SDR team was established in Ireland in 2012 to assess suitability of cases of children referred for consideration of SDR. Public information is limited on this but it is known that between 2012 to July 2016 that 20 children were referred for consideration. Between 2014-2016, we inquired about Kyle’s suitability for the procedure. We were told that Kyle's level of mobility was classified as a 4 on the GMFCS scale and that only 1-3 were deemed suitable. He would not be referred further.

Hope dissipated that Kyle would walk and we began exploring ideas to make our house more wheelchair friendly. However, in April 2016, we saw a TV show “What Would Be Your Miracle” in which a young Welsh boy in a wheelchair with similar mobility to Kyle had the surgery and is now walking. The show covered his post-op recovery with SDR Fitness Wales, a physio team that works with children both pre & post-op. This was our Hail Mary play, one last chance to have Kyle assessed by a team that specialise in children that are suitable for, and successful with, SDR surgery.

We received confirmation from the team in Wales in September 2017 that they would evaluate Kyle over 5 days in March 2018. We packed our bags and knew that at the end of those 5 days that we would either be calling America or calling a builder, this was it.

Kyle engaged really well with his physios, Martin and Mark. They were both highly positive that the level of flexibility that Kyle had should see SDR improve his prospects to walk. By pure chance, Mark informed us that Dr TS Park that performs the surgery in America was in Ireland the following week with his team. We were amazed to hear that he holds a party every year for the children in Ireland that he has carried out the surgery on. He then travels to London and has a celebratory party with children in the UK.

We met Dr Park and his team in the Ballsbridge Hotel in early April 2018. With children walking around us with canes, walkers, independently and even running, we noted all the information the team needed. By the end of April we submitted Kyle’s X-Ray’s, MRI results, medical history and a range of videos for the medical team to evaluate the level of strength Kyle had to sit, kneel and, with a great deal of help/support, try to stand from a sitting position by driving all his strength through his heels to lift his pelvis upward and transition to a standing position.

On Wednesday July 17th 2018, we got a letter informing us that Kyle '.....is a good candidate' and that they '....strongly recommend that he have the rhizotomy surgery'. We have shared this letter on our page for other families to understand the evaluation that is undertaken.

It is good news that the Irish system has established a program to begin evaluating children for SDR surgery. However, this process for evaluation is still relatively new in Ireland having been established in 2012. This was the year that the UK began carrying out the surgery in Leeds though not publicly funded by the NHS. Dr. John Goodden carries out this surgery in Leeds after working with Dr Park in Missouri to learn his methodology. Until 2016, Ireland had referred 20 children and Leeds had operated on 70 children. This is the date the websites were updated and I do not have information for the numbers to 2018. However, very recently, the NHS approved public money for this procedure (children classified as GMFCS Level 2 and Level 3, not Level 4) after findings on 137 children. This is unquestionably a positive development and further evidence of acceptance of this surgery. We hope Ireland will follow soon and develop the expertise of our neurosurgeons to help Irish children.

We recognised that the Irish health system cannot be all things to all men. We work with some incredible people in Enable Ireland and the CRC who have been an immense support to Kyle and to the family. However, as parents, we had to explore the capabilities of professionals outside our borders. In St. Louis Children’s Hospital, SDR has been successfully been carried out on over 3,600 children from 72 different countries by an amazing human being, Dr Tae Sung Park (TS Park). The President of the Hospital refers Dr. TS Park as the “Guardian of Cerebral Palsy” for his wonderful achievements in helping children to walk. Dr Park is the preeminent neurosurgeon in SDR and the global expert in managing cerebral palsy spasticity. After 4 years of hope & heartbreak, we have pushed a large heavy door ajar just enough to let in a letter from St. Louis. We need to fund-raise €100,000 which is a tremendous amount of money. This will pay for his surgery in St Louis and help us with travel & accommodation costs as we need to remain in America for 1 month and also intense post-op physiotherapy to build up his legs. At the moment, Kyle has the body of a 5 year old but the leg strength of an infant as he has never used his legs before. This surgery is Kyle's hill, we're climbing it with him and we hope you can come along.

"The first step towards change is awareness"- Nathaniel Branden and we hope Kyle’s story and those of many other children will change at least one Irish family’s journey from No Hope to Know Hope.

Case · September 22, 2018

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