A family face upheaving their life in South Wales East and relocating to the USA in a desperate bid to access potentially life-saving treatment.
Eight-year-old Gabriella was diagnosed with a nano-rare disease called Dentatorubral-Pallidoluysian Atrophy (DRPLA) and is poised to take part in a stateside drug trial.
DRPLA is an inherited neurological condition which causes learning difficulties that become progressively worse, including epilepsy and changes in behaviour.
In addition to this, abnormal movements and difficulty with co-coordinating movements will occur, but ultimately Gabriella’s condition will worsen leading to her demise at a very young age.
Gabriella’s mum Zoe Hoes met with Natasha Asghar MS this week to discuss Gabriella’s situation and the potentially life-saving treatment in North Carolina.
The promising trial will involve the family leaving Cwmbran and moving to America for upwards of a year so Gabriella can receive treatment.
Natasha raised Gabriella’s story and DRPLA in the Welsh Parliament this week and called for urgent action to improve support for those living with rare diseases.
The South Wales East politician told the Senedd:
“My constituent Zoe Hoes has shared the heartbreaking story of her adopted daughter Gabriella, aged 8, who has been diagnosed with DRPLA. Despite a confirmed diagnosis, Gabriella has faced unacceptable delays in accessing specialist care.
“An urgent referral was declined, and private assessments have been limited. Access to a promising trial drug in the US hinges on a UK neurologist’s assessment—forcing the family to consider relocation.
“Zoe’s research, supported by clinical evidence, shows DRPLA is significantly more prevalent in South East Wales than previously recognised. This raises serious questions about awareness, diagnosis, and care coordination for rare diseases in Wales.”
Natasha added: “I would welcome a statement from the Cabinet Secretary for Health outlining how the government is working to improve genetic testing, raise awareness, strengthen care pathways, and support families emotionally and financially.
“No family in Wales should face a rare disease alone. Let us act now to ensure timely, equitable, and compassionate care.”
Welsh Government Minister Jane Hutt MS responded: “Thank you for drawing attention to DRPLA. I'm sure many of us are not aware of that, but it's important that you've raised awareness today.
“This is, I think, very relevant to the rare disease action plan priorities, which the Welsh Government is working closely with the NHS on.
“It includes raising awareness—as you are today—and improving the availability of information and resources. The UK rare diseases framework and the national action plans that support it come to an end in 2026.
“So, officials from across the four nations are considering the future of UK-wide rare disease policy collaboration, which is really important in terms of addressing these needs.
“In fact, an inaugural Welsh rare diseases research network event took place last month at Swansea University, and that is an important step which is to be shared with the Senedd today, because it strengthens Wales's approach, as well as the four-nation approach, to rare disease research.”
Commenting after the exchange, Natasha Asghar MS said:
“With no DRPLA drug available in the UK at the moment, Zoe and Gabriella have no choice but to look at relocating to America to access this potentially life-saving treatment.
“This major impending move is understandably causing the family extra stress and anxiety at a time when they are already having to deal with so much.
“It is clear we have much more work to do in this country when it comes to the research and treatment of rare diseases like DRPLA and I will continue to work with the family and do all I can to campaign for these urgent improvements.”
Mum Zoe Hoes added:
“I am incredibly grateful for Natasha Asghar MS raising this important issue in the Welsh Parliament and highlighting Gabriella’s story.
“Raising awareness of DRPLA is incredibly important especially due to the number of people in South Wales who are suffering from the disease or are at risk of developing it.
“It is essential the Welsh Government acts to fully research DRPLA, ensure better access to genetic testing on the NHS, and fund treatment for this rare disease.”
