James Meacham is one of the Dads taking on the 2024 BikeBoatBoot challenge.  After completing the 10nTaff challenge in 2022, James jumped at the opportunity to join the other Dads on their latest challenge to cycle, hike and kayak the length of Wales in just 4-days.  All to raise awareness of and support for the children’s hospice.

At the Tŷ Hafan Gala Dinner in March 2024, James told the story of his son Thomas, his family and their Tŷ Hafan journey.

“My name’s James Meacham and I’m a Tŷ Hafan dad. I’m going to tell you how Tŷ Hafan supported my family in the absolute worst time of our lives.

I spoke at the ball in 2019, about four months after Thomas died, here I am again four and a half years on so some of you might’ve heard bits of this… but here goes

My beautiful wife Sarah and I had no idea what was around the corner.  Thomas was a normal, healthy, 8-year-old child. Fit, active, he’d been a karate student for 4 years, loved the outdoors but also loved books, Marvel, Star Wars and food!!  Bigger appetite than me.

In September 2017, we started noticing differences in Thomas that were very out of character for our bright, intelligent, articulate little boy;

• Forgetfulness
• Attention span
• Handwriting
• Balance/co-ordination
• General behaviour

This meant that we found Thomas saying the front steps are blurry, he was getting lost in the play yard, or he was coming home wet as he couldn’t find the school toilets

In the 3 months between the start of that school term and the Christmas, these symptoms continued and after optician checks proved there was nothing wrong with his eyesight, we made plans to use my work healthcare plan to get him checked early in the new year.  Thomas jumped the queue, so to speak, when he had two seizures.  We initially went to the Gwent Hospital, then transferred to the UHW Noah’s Ark and after a week or so got the diagnosis of ALD.

ALD is a very rare, genetic brain disease that affects the white matter, the coating that protects the nerves gets damaged and it is terminal.  The best way I can describe it in layman’s terms is watching a child have a mix of dementia and motor neurone disease.

Which sounds absolutely horrendous, because it is.

Thomas had the most aggressive form, for example he lost his sight within six weeks of diagnosis and before long was completely dependent on us for all his needs.

Most of you in the room will have children, grandchildren, maybe even nieces or nephews that you love more than life itself.  When you go from being parents of a normal healthy child to being parents of a terminally ill one, in the blink of an eye, trust me, you don’t know what to do.

That brings me to the start of our involvement with Tŷ Hafan. We were referred to them by the hospital and they were on the ward with us the day after.  I knew then we were in good hands.  Hayley and Emma were so reassuring and clearly highly competent at dealing with families who are in an unbelievable situation.

Up until then my understanding of the word hospice was just the stereotypical view of sadness, end of life care etc.  I’ve said it before, but I could not have been more wrong.  It’s the most inspiring, uplifting place, bright, colourful, often loud, and staffed by complete legends!  Honestly, if you’ve not visited it at one of their open days etc then you should do, it’ll will really open your eyes.

The care and support from our first visit there, when Thomas was well enough to enjoy the drum kit and the park, to subsequent visits where we needed crisis stays or the standard respite stays, we were treated like family.  The professionalism and care of the nurses that we received was incredible every time.  We spent most of summer 2018 staying there because Thomas was so ill.  And if anyone needs to put weight on, that’s the place to go!

Thomas died at Tŷ Hafan in June 2019.  Even though we knew it was coming, it was still unbelievably hard, so having the support of the staff there, from practicalities like taking me to the registry office, to emotional support for us and our extended family, again, I don’t know how we’d have coped otherwise.

We’re here tonight raising vital funds so that Tŷ Hafan can take the care they provide on the road and therefore support more families like mine.  I won’t go into the funding received from charitable donations versus the paltry sum donated by government because we’d be here all night.  And let’s face it, until our politicians grow a conscience, places like Tŷ Hafan will always rely on people like you!

For every 10 families in need of Tŷ Hafan’s services and care, 9 are not currently supported.  So, there are 9 other families with children who aren’t expected to see adulthood aren’t being supported – yet.

I’ve built up a network of friends since being involved, the Dads group is a safe space where we can offload anything, vent, rant, swear to people who you know just “get it”.  With two other Dads , we have dreamt up a challenge where we’re going from North Wales to Tŷ Hafan in 4-days by hiking, kayaking and mountain biking.  We do these challenges every two years or so to raise money, but one of the most positive outcomes is we all talk… about kids we’ve lost, kids still with us, and how hard it is.  This is really important because men are usually rubbish at talking about how they feel and as parents in this situation we’re in an even smaller demographic.  So, when Paul and I were out training on the bikes recently and he fell off, allegedly avoiding a dog, my laughing was actually therapeutic – cheers Paul!

In closing, one of the many memories that will stay with me is this.  On the day Thomas died, we’d finally gone to bed in the room next door.  Understandably, Ella couldn’t settle and she had leg ache.  I think we must’ve left our Calpol in a bag in the room where Thomas was.  It was about 11pm as I crept in, the room was very cold for obvious reasons, but there was Amanda, his nurse – bless her she used to say he was the son she never had – quietly reading to him.  I was gobsmacked, asked what she was doing, she said, “I couldn’t leave him on his own” and even after all the emotional rollercoaster that day had brought, I was speechless.  That level of care and love was just amazing.

As I said, even now, four and a half years on, we are still supported.  Our daughter Ella is now 10 and still has regular play therapy sessions, where the therapist comes to her school for an hour each week and provides the age-appropriate therapy through play that she needs.  We do our best as parents obviously, but the more she grows up and learns about the world, the more it’s important to have experts from Tŷ Hafan who can help us in supporting her the best way possible – because as you can imagine the grief is breathtakingly hard at times.

So, thank you all. Every one of you spending money to be here tonight, all the donations via the QR code, raffle tickets, doesn’t matter the amount – it all counts. If you think of it, 3 words that should not go together in the same sentence are “paediatric palliative care” – and in a perfect world Tŷ Hafan shouldn’t exist.  But, as me and Sarah can testify, sometimes it’s a very cruel world, and we need this place to be given everything it needs to carry on helping children like Thomas and families like mine. Thank you again, have a great night!”

After James spoke, he raffled a ball signed by Wales rugby legend Sam Warburton and coach Warren Gatland, raising £1250 for the #BikeBoatBoot challenge.

To sponsor James on the BikeBoatBoot challenge and support his family and other families with children who have life-limiting illness, please go to his Just Giving page – James Meacham Bike Boat Boot Challenge for Tŷ Hafan