A brave daughter has spoken movingly about why she’s decided not to have children after seeing the devastating effects of a hereditary brain condition on her mum and her aunty.
Katie Davies, 36, from Ruabon, near Wrexham, says there’s too much of a risk that she might pass on the cruel illness, Huntingdon’s Disease, a genetic disorder that affects the nerve endings of the brain.
It causes progressive damage that leads to physical, cognitive and emotional changes and each child of a parent with Huntingdon’s Disease has a 50 per cent chance of inheriting the gene.
For the past eight years her mother, Fiona Jones, 59, has been a resident at Pendine Park’s Penybryn care home in Wrexham which specialises in looking after people who have the condition that’s been described as Parkinson’s, Motor Neurone Disease and Alzheimer’s rolled into one.
In a cruel twist of fate Fiona’s twin sister, Alison, also fell victim to the disease and sadly passed away in 2020 after spending her final years living at Penybryn alongside her.
Initially Alison’s illness progressed at a faster, more noticeable rate than Fiona’s when it was in its early stages.
But not long after her sister’s symptoms were evident in her mid to late thirties Fiona also became afflicted with the first emotionally devastating effects of the progressive debilitating illness.
Mum of four Fiona is one of 10 residents living with the disorder who are now being cared for at Penybryn which has just been recommended to become a fully accredited Huntington’s Disease care centre.
The recommendation to officially acknowledge the contribution of Pendine Park came from Huntingdon’s expert, Dr Alberto Salmoiraghi, a consultant psychiatrist and medical director with the Mental Health and Learning Disability Division at Betsi Cadwaladr University Health Board, who is a regular visitor to Penybryn.
According to Katie, who lives with the fear of developing Huntington’s Disease, the honour was a much deserved feather in the cap for the “amazing” staff at the home.
Penybryn manager Tracey Cuthill said it was an honour for the home to be recommended to become officially accredited as a Huntington’s Disease centre.
She said: “It is an acknowledgment of the work we all do and we are proud to be considered as a centre of excellence by families and medical professionals.”
Katie decided to speak out to raise awareness of the chronic illness that’s transformed her mum from a bright and cheerful head of the family into a struggling, stumbling and sometimes unpredictable personality suffering wild mood swings and strange fixations.
It was heart-wrenching to watch and exhausting as the eldest daughter to have to take on the role of stand-in mum to her younger brother and sister, Ted and Kia, when their own mum could not cope.
Katie, who lives with her husband Sion and works as a domestic at Wrexham Maelor Hospital, explained how both twin sisters, Alison and Fiona knew in younger years that they had a 50-50 chance of inheriting Huntington’s disease from their father who also died of it, as did his own father.
Katie said: “It was mum who first spotted the early symptoms in Aunty Alison, though at that point she was not symptomatic herself. She noticed how my Aunty would struggle to find the right words sometimes and was prone to stumbling and strange jerky movements. Involuntary spasms are one of the first symptoms, along with stumbling and what can be misconceived as clumsiness.
.“Sadly, mum soon began to manifest similar behaviour herself, though at first it was at a less prominent rate than my aunty.
“Our childhood was different than those of other kids in our street as we had to take on board lots of the routine tasks which a parent would normally do.
“But it was not mum’s fault, it was the disease laying claim to her. She would shake physically and mentally. The symptoms were out of her control.”
Katie has lived under the shadow of the disease all her life, but she has purposely chosen not to find out if she is carrying the Huntington’s Disease gene or not.
She said: “ At the moment I do not know if I will get Huntington’s or not. It is something I have thought long and hard about but for now I have chosen not to be tested.
“For years I lived in constant fear that I might be next, until I was referred for counselling to help me with my mental wellbeing and stop thoughts of the disease taking over my whole life. Now I just live my life each day as it comes and enjoy time with Sion and our family.”
Because Katie does not know if she has inherited the gene she has also chosen not to have children so there is no danger of her passing it on to descendants.
She said: “In one way Sion and I have already had the experience of bringing up a family as following my mum’s diagnosis we took on the responsibility of raising my brother Ted, and sister, Kia when they were both still primary school age, about 10 and eight.”
Ted is now aged 20 and Kia 18 but Katie explained: “Sion and I were married in our early 20s and as mum deteriorated they came to live with us full time.”
She said: “It is such a difficult thing to have to explain and I did not want it to colour our relationship. But I knew there would be a time when I’d have to tell him what was actually wrong, especially as mum’s behaviour grew more erratic. I knew one day the kids would have to live with me.
“When I did tell him he was so supportive and understanding, as he’s been ever since.”
Katie’s heart also goes out to her grandmother, Fiona’s mum, Myra Pritchard, now 81, who has had to watch both her daughters and her ex-husband, Colin, become incapacitated with Huntington’s Disease.
“It is our dearest hope that the more awareness is raised and the more we know about this genealogy, no one else will have to suffer like mum and Aunty Alison and we will one day be able to eradicate Huntington’s forever, “ added Katie.