Go Go Gwilym!

Gwilym is six years old and is daily practising his ‘flat feet walking’ to counteract the spasticity (tightness) in his legs. All our friends and family are used to hearing us give the odd quiet reminder to try a bit of ‘flat feet walking’ when we’re out and about. So much so, Gwilym’s two year old sister, Nia, immediately responds and does the best, exaggerated comical steps: the sight of the pair of them holding hands and squealing with each ‘stomp’ always causes a giggle but also immense pride in this mama’s heart!

We found out Gwilym has mild bilateral Cerebral Palsy when he was just over one year old. As a premature baby, born at twenty-seven weeks, we weren’t quite sure how to really adjust his age for those typical baby milestones and just assumed he was delayed in sitting and crawling. After his diagnosis, Gwilim’s routine weekly physiotherapy sessions took on more importance and we quickly realised that we needed to be more proactive in helping Gwilym with the simplest actions. He moved around only by crawling and would need both his hands to be held and ‘guided’ to walk until he was three and a half.

We’ve since celebrated many ‘firsts’ with him during the 2020 lockdown: pushing himself into a standing position, standing on his own for a couple of seconds which he gradually extended by a second at a time. When he started school, he was able to coast and walk a few metres between the surfaces. Like thousands of others, lockdown brought an abrupt halt to Gwilym’s medical treatment and when his NHS physiotherapy was completely stopped, we had to look elsewhere. We found a truly dedicated Strength and Conditioning Coach in Rhiannon Owens at 'SDR Rehab' in Cwmbran who worked wonders with Gwilym and is still helping him develop the mindset of a mini athlete; he knows that practice will make him stronger and better at anything. Gwilym works hard and loves alternating between the silliness of balloon games and dancing and the challenge of weighted sit-ups and and squats.

Gwilym is now awaiting to have Selective Dorsal Rhizotomy (SDR) surgery at Bristol Children's Hospital in September/October 2023. During this surgery, the surgeon will identify the sensory nerves within Gwilym’s spinal cord that are sending the wrong signals to his legs and causing the spasticity. Once these specific nerves are cut, Gwilym can un-learn the coping strategies he now uses to stay upright and balanced and, essentially need to relearn movement patterns and strengthen underused muscles. This is why specialist physiotherapy is the determining factor to the success of this once-in-a-lifetime operation. We hope that, after surgery, Gwilym's ‘flat feet walking’ can become the norm rather than use up so much of his concentration and effort.  

Gwilym’s indomitable Strength and Conditioning Coach, Rhiannon Owens, reminds us that ‘the stronger Gwilym goes into the SDR operation, the stronger he will come out’ so we have been fundraising since September 2022 to increase this specialist therapy and make sure he can have the best preparation and post-op rehabilitation possible. All money donated will be used to pay for specialist physiotherapy. 

We’ve spent the last 6 months feeling very grateful to our friends and family for all the amazing fundraising events that have been put on for Gwilym's benefit. We initially aimed to raise £18,000 by Gwilym's 6th birthday in March 2023 which we achieved. We have been able to pay for blocks of intensive physiotherapy over this summer holiday and know we have the money needed to start Gwilym's 2 years of post-surgery rehabilitation. Any further money raised will ensure that he has the best rehabilitation. We just want to thank everyone once again for all your donations – and thank you for simply getting this far and reading about our superboy!

The technical bit: 7.5% of all donations to 'Tree of Hope' in relation to this 'Go Go Gwilym!' appeal will be allocated to the general charitable purposes of 'Tree of Hope' to cover their core operating costs. If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for Gwilym's needs in accordance with 'Tree of Hope' charitable objects. If in those circumstances, we are unable to use all or part of the funds for Gwilym's benefit in accordance with 'Tree of Hope's charitable objectives, then any funds that cannot be used will be transferred to be used for the charitable purposes of 'Tree of Hope'. 

x Thank you, once again! x