Hopcyn’s Next Step

Hi, I’m Carys. My husband, Marc, and I have a gorgeous three-year-old son, Hopcyn, who has spastic quadriplegic cerebral palsy. This affects all four of his limbs. His muscles are in a constant tense state and he has difficulty controlling and supporting his trunk.

As a result, he has very little independent mobility and is unable to sit up, stand or walk independently. His condition also affects his fine motor skills, which means he needs support to eat, explore and play.

He uses around 30 words, with more coming all the time, and loves to babble and chatter. He is the most joyous, happy child you could ever meet, with a truly infectious laugh. Everyone who has the pleasure of meeting him quickly discovers how special he is.

Why we’re asking for help?

This is never a position we imagined being in. But the costs of therapy, equipment and appointments means our goings far exceed our income as a single salary household.

Our incredible friends have worked tirelessly to set up this page for us. We are truly blessed with the best support network, and we’d be lost without them.

Their wish is for us to be able to make decisions based on what is best for Hopcyn, without the additional worry of how we will afford his treatment, rehabilitation, equipment and support.

These are some of the current costs of which you can read more about below:

Specialist physiotherapy - £70 a week

Hydrotherapy - £50 every other week

AFOs (ankle, foot orthotics) - £4000 a year

Wheelchair - £5,381

2 weeks of intensive therapy - £6,000 a year

Helping Hopcyn develop

Physiotherapy and Hydrotherapy

Hopcyn works incredibly hard to learn skills that many of us take for granted. Daily stretches, physiotherapy and repeated practice are a huge part of our lives, helping him build and maintain those skills.

Alongside his exercises at home, Hopcyn sees a private physiotherapist every week and attends hydrotherapy every other week.

You might understandably wonder why we are paying privately when NHS support is available. Here is our experience.

In our experience, NHS physiotherapists are under enormous pressure, and we haven’t been able to access the frequency of treatment and specialist input Hopcyn needs.

This is not a criticism of the individual physiotherapists supporting families. We want them to have the time, resources and specialist support they need.

Finding our specialist private physiotherapist has has completely changed Hopcyn’s life along with us as parents. We are seeing progress and milestones being met when previously it felt as though we weren’t moving forward.

We learn so much from them that we can put into practice at home every day, and Hopcyn thrives in their sessions. Seeing that progress gives us hope for his future and for greater independence.

Orthotics - £4,000 a year

Hopcyn needs supportive ankle foot orthotics to help keep his feet and ankles properly aligned. Without these Hopcyn would have far far greater difficulty in walking in his walker and possibly wouldn’t be able to access the walker

Due to staffing issues, we waited months for his first NHS appointment to have casts taken. At the second appointment, his braces were fitted. We expected a follow-up six weeks later, but nine months on, that appointment still hasn’t happened.

As Hopcyn’s ankles were beginning to roll inwards, we felt we had no choice but to seek private support. Getting the right support has been a game changer for his walking ability, gait and stamina and proved that this was a non-negotiable moving forward

Wheelchair - £5,381

Hopcyn received his first NHS wheelchair when he was one year and ten months old. He still has it, even though he has now outgrown it.

We have already spent five months waiting to join what we have been told is a further nine-month waiting list for the next size up. Yes, you read that right.

He currently has no suitable NHS wheelchair, and we have been told he is still at least nine months away from receiving one.

A suitable wheelchair is essential for getting out of the house and taking part in everyday life. We have therefore had to go private for the sake of his independence and development, and to make daily life manageable. Carrying a three-year-old everywhere is very different from picking them up for five minutes when they’re tired of walking.

We are grateful that the NHS has provided other essential equipment, including a standing frame, a Rifton walker and supportive seating.

Our circumstances

If you choose to donate, we want to be open about our circumstances and the costs we have covered so far.

I had one year left of my mental health nursing course at Cardiff University, but I was unable to complete it because of Hopcyn’s care needs. I am now his full-time mum and carer.

As a typical west Walian, Marc is incredibly careful with money. Thanks to him, we have stretched everything as far as we can to support Hopcyn’s development. He does all this while supporting me, being the best dad imaginable and working in a role he loves as an additional learning needs (ALN) teacher.

We have done everything we can to meet these costs ourselves, but the financial pressure has become overwhelming.

What we hope to raise?

£10,000 - a year of essential support

This would cover a year of physiotherapy, hydrotherapy, orthotics and specialist Lycra suits.

£16,000 in total - including two intensive physiotherapy weeks

An additional £6,000 would fund two intensive physiotherapy weeks: one abroad and one in Wales.

£46,000 in total - towards SDR surgery

Our biggest fundraising goal would allow us to work towards selective dorsal rhizotomy (SDR), a specialist operation intended to permanently reduce spasticity, or muscle stiffness.

For Hopcyn, spasticity is one of the things affecting his ability to move and work towards walking. Pursuing surgery would depend on specialist assessment and advice about whether it is suitable for him and what it could achieve.

How you can help?

We want to give Hopcyn every opportunity to develop his skills, feel comfortable and become as independent as possible. Regular therapy and the right equipment are central to that, but keeping up with the costs has proven impossible.

We would be sincerely grateful for any donation, big or small. We know times are challenging for everyone, so if you are unable to donate, please consider sharing this page or even talk to a friend about it

We will keep you updated on Hopcyn’s progress and how your donations are being used to support him.

Here’s to Hopcyn, his future and every step along the way.

You can follow our journey on Instagram.

Diolch o waelod calon ❤️

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.