Bridgend dad Chris Connor will be taking on the Brecon Carreg Porthcawl 10K for Tŷ Hafan Children’s Hospice this July – and is urging others to sign up to run for Tŷ Hafan too.
“I started running after my father passed away eight years ago,” says Chris. “I needed to change some things in my life and I thought to myself, ‘let’s start running so I can try to be around a bit longer. For me, for Emma and for Mia.’”
Fourteen-year-old Mia is Chris and Emma’s only child. She and her parents have been supported by Tŷ Hafan for the past 10 years.
“Mia’s non-verbal,” says Chris, “and while she is the size of a fully grown adult, she is developmentally somewhere between that of a six to nine month old baby. She has a form of epilepsy which we believe, ultimately means not being able to learn or remember things. The word ‘Mum’ pops out every now and then and ‘Dad’ once a quarter.
“But she knows her own mind and is a cheeky tinker. She knows exactly what she wants and what she needs and she loves being outdoors. All she wants to do is be taken for a run or a walk in her buggy. She loves it and it settles her right down.”
Chris runs regularly with Mia in a special adapted buggy, often running through the beautiful Merthyr Mawr sand dunes near the family home in Bridgend.
“Mia was an IVF baby,” says Chris. “We’d been trying for a number of years when she came along. But when she was just a couple of days old she went lifeless on us and she was rushed into hospital. She seemed to recover from that, but a couple months later we started to notice that she was missing her milestones.”
Over her first Christmas Mia was diagnosed with chronic epilepsy, but since then the exact nature of her condition has remained a mystery.
“The cause of Mia’s problems are still unknown” says Chris. “They’ve found no genetic markers. Lots of studies have been done and they’ve found nothing. She’s now going through the SWAN clinic in Cardiff in a last-ditch attempt to find a reason for how she is. But I don’t know if they ever will find any answers.”
Chris recalls the heartbreak of his and Emma’s first Christmas together with baby Mia.
“It was a very difficult time,” says Chris. “Mia was started on a meds jumble which she’s been on ever since then and our first couple of years with her involved a lot of hospital visits and a lot of unknowns.
“But beyond that was realising that Mia was not going to grow up as normal. We suddenly realised, she’s not going to uni, she’s never going to a ball, never going to be married, never going to have her own children, everything you’d hope and expect for your child – none of that is going to happen for Mia.
“It took me quite a while to accept. I just couldn’t understand – I’d think to myself, what’s the point of Mia? What is she giving to society? But when you get through to her and when you see her smile – everybody feels it. And in time I’ve come to realise that that is Mia’s job – to make people happy.”
Mia, Chris and Emma started to be supported by Tŷ Hafan around Mia’s fourth birthday.
“Our family have never been able to help us and if we didn’t have Tŷ Hafan, we’d have struggled massively with no support.” says Chris.
“Tŷ Hafan has definitely helped to keep our little family together. And it has given us more of an existence, more of a life, with the opportunity to change to be normal and not just carers. Emma and me always get on better, when we stay at Tŷ Hafan. We’re always that bit more giggly and better with each other.
“Mia is now quite big, and she has no sense of danger. That means that every minute of every day, almost every second of every day Em and I have to look out for her.
“It’s really only when we are at Tŷ Hafan that we are able to power our brains or systems down enough to properly relax because it is only at Tŷ Hafan that we are able to trust that Mia’s in safe hands.
“When we can bring Mia to you, we know that we can hand her over to professionals that get her enough, so that we can brain switch off enough to have some time together.
“We do get the support of personal assistants at home a couple of hours a week, but Tŷ Hafan is as near a complete switch off for Emma and I that you can get, I think. We’ve even managed to attend a concert in Cardiff and not having time restrictions, knowing Mia is in safe hands is simple magic.
“And as for Mia. What does Mia get from Tŷ Hafan? She gets to be herself in a secure building with professional staff. The facilities and location are right up Mia’s street, room to stretch and play, right next to the sea with trees all around.”
While Mia is not able to walk, she can sit up cross legged unaided and shuffle around on her bottom.
“Mia is very happy to drag herself around with her heels,” says Chris. “She smiles and she giggles, and she loves to kick things or other people, or slap things and push things away. She absolutely loves music, we always have Kids YouTube songs on in the background.
Chris and Emma had started their own IT business before Mia was born. After the extent of Mia’s needs became clear Emma become her full time carer while Chris continues to run the business. Recently both of them have also had to face their own health issues, with Emma battling cancer and Chris, dealing with mild heart problems.
“We’ve had brilliant support from Tŷ Hafan to support us through these times,” says Chris, “with a few crisis stays to help us get through.”
“Em had her ‘in the clear notification’ last Nov and right now, we’re enjoying every day. We’re clear and healthy and well at the moment.
“Life will always throw curve balls – your choice is how to deal with each curve ball however you wish. Our choice is, as much as we possibly can, is to catch it, throw it back and get up and smile.”
Chris is now in training to do the Brecon Carreg Porthcawl 10k for Tŷ Hafan. “Running is my switch off time,” says Chris. “I run three times a week, I usually run alone and I do it for my sanity.
“And on most Saturday mornings, I’ll run with Mia in her buggy and she absolutely loves it. She loves nothing more than being outdoors.
“For a long time it was as if Mia didn’t have emotions – but now, she is a lovely little lady. And so often now, and especially with Tŷ Hafan’s help, we don’t feel like just carers anymore but we are Mia’s parents. And it’s lovely.”
James Davies-Hale, Head of Fundraising for Tŷ Hafan Children’s Hospice, said: “We’re so grateful to Chris and everyone who will be running the Brecon Carreg Porthcawl 10K for us on Sunday July 6th.
“With the support of people like you Tŷ Hafan will be able to walk alongside every family that needs us, through their child’s short life, death and beyond.”
“We have more than 100 runners signed up to run for us already, but we can take up to another 100. So if you’re keen to do a running event while raising funds for a really great cause this year and haven’t signed up to one yet, then this is your opportunity.”
Click here to find out more and to sign up.