## Bridgend Family’s Ongoing Search for Answers as Daughter Lives with Rare Condition
A family from Bridgend have shared their continuing heartbreak and resilience as their 14-year-old daughter, Mia, remains trapped in what her father calls “the mind of a six-month-old baby in an adult body.” Despite years of consultations and medical investigations, the Connors remain in the dark about the exact nature of Mia’s profound condition.
Chris and Emma Connor welcomed their daughter Mia after a long period of hope and perseverance with IVF. Initially, Mia seemed to be a healthy newborn, but just days later she was rushed to hospital after going lifeless unexpectedly. Though she bounced back from this early scare, further months saw the new parents grow increasingly concerned as Mia missed the typical developmental milestones.
It was over their first Christmas as a family that a diagnosis arrived: chronic epilepsy. Since then, however, the precise cause behind Mia’s severe developmental delays has eluded the expertise of countless medical teams. “Mia is non-verbal, and while she’s the size of a fully grown adult, cognitively she is somewhere between six and nine months old,” explained Chris. The gravity of Mia’s situation forced the family to come to terms with a life very different from the one they had envisaged for their daughter.
Accepting this reality has been deeply challenging for Chris and Emma. “We realised she wasn’t going to university, not going to balls, not getting married, or having her own children—all the things you dream your child might experience. None of that will happen for Mia,” said Chris. The uncertainty and sense of loss were at times overwhelming, but over the years, the family has found joy in Mia’s unique presence. “When she smiles, it lights up those around her. That, I’ve come to see, is Mia’s gift.”
Despite rigorous genetic testing and consultations with multiple specialists, Mia’s complex neurological condition remains a mystery. She is currently being seen by clinicians at the SWAN (Syndromes Without A Name) clinic in Cardiff, a final effort to identify a cause. Chris harbours doubts that they will ever get definitive answers but remains hopeful nonetheless.
Amidst the medical uncertainties, Chris and Emma have dedicated themselves to Mia’s care, adapting their lives around her needs. Chris continues to run an IT business, whilst Emma is now Mia’s full-time carer. The family often enjoys the natural beauty near their home, with Chris taking Mia for runs in a specially adapted buggy through the Merthyr Mawr sand dunes. “She loves being outdoors,” he said, describing these outings as precious shared moments of happiness.
Support from Tŷ Hafan Children’s Hospice has been a lifeline for the Connors. The hospice has provided more than a decade of practical help and emotional respite, allowing Chris and Emma valuable breaks from the intense demands of caring for Mia. “Without Tŷ Hafan, we’d have struggled massively,” admitted Chris. “When we stay there, Emma and I are able to relax and be ourselves, knowing Mia is safe.” Even so, the strain is ever-present. “Mia is now grown, with no sense of danger, so we have to watch her every second. At Tŷ Hafan, it’s the one place we can really switch off.”
The past years have brought additional challenges. Both parents have faced their own significant health issues—Emma has recently finished cancer treatment, and Chris is managing heart problems. Nevertheless, they remain determined to embrace every good day together. “Life will always throw curve balls. Our choice is to catch them, throw them back, and keep smiling,” Chris reflected.
In a gesture of gratitude, Chris is set to run the Brecon Carreg Porthcawl 10K race this July to raise funds for Tŷ Hafan. The charity’s head of fundraising, James Davies-Hale, expressed his appreciation for Chris and the wider community’s support, noting that every runner helps Tŷ Hafan continue its essential work with children affected by life-limiting conditions.
Through their struggles, the Connors have become emblematic of the resilience and love shown by many families facing the unknown. Their story serves as a stark reminder of the crucial support hospices provide, and the extraordinary strength families like theirs display every day.