Mia is fourteen but has the mental age of a much younger child of around six months after being diagnosed with chronic epilepsy as a child, with doctors unsure what caused it
A father has spoken of his sadness how his teenage daughter with the mental age of a baby will never “go to university, be married or grow up” thanks to an unknown condition.
Parents Chris and Emma Connor grew concerned for little Mia when they realised she was missing milestones growing up. Over her first Christmas she was taken to hospital for tests and diagnosed with chronic epilepsy, but since then the exact nature of her condition has remained a mystery. Now doctors say the 14-year-old has the mental age of a baby aged between six and nine months – with no clue as to what caused it.
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Chris told WalesOnline: “It was a very difficult time, but beyond that was realising 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.
“The cause of Mia’s problems are still unknown. 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 and Emma continue to give Mia the best life possible, and Chris runs regularly with Mia in a special adapted buggy, often through the Merthyr Mawr sand dunes near the family home in Bridgend. He is running the Brecon Carreg Porthcawl 10K for Tŷ Hafan Children’s Hospice this July as they have supported his family and Mia for more than a decade.
Chris added: “Our family has never been able to help us and if we didn’t have Tŷ Hafan, we’d have struggled massively with no support. 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 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 there we are able to trust Mia’s in safe hands.”
The parents have also had to face their own health battles, as Emma was diagnosed with cancer and Chris has mild heart problems.
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 6.”
