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‘I’m 34 and want children but having Huntington’s disease means I might never get old’

At first, Victoria Mullins’s father was diagnosed. But her family quickly learned that the gene for the disease has a 50/50 chance of being passed on.

When Victoria Mullins watches an elderly couple embrace on television, she feels the prick of tears, and an unwanted thought enters her head: “I might not ever live to get old.”

At 34, Victoria is currently in good health. But in September last year she received the devastating news that she carries the gene for Huntington’s disease, a rare degenerative condition that affects the cells of the brain.

She cannot know how or when the disease will affect her. But for now, she tells herself she cannot let fears for the future rock her and is determined to live her life to the full.

Victoria’s world was suddenly turned upside down when her 72-year-old father, Bill Collard, was diagnosed with Huntington’s disease last year, after suffering symptoms including mobility problems and slurred speech.

While Bill’s symptoms were being investigated, Victoria’s aunt mentioned that Bill’s uncle had suffered from Huntington’s disease. Bill told the consultant investigating his symptoms, who felt it made sense to test him for it.

“We had started noticing over the past two or three years that my dad was not remembering things as well,” recalls Victoria. “He was becoming unsteady on his feet and slurring his words. We knew something wasn’t right and told him he needed to get checked out by doctors.”

Victoria Mullins and her father, Bill Huntington's Disease case study Provided via WhatsApp to writer Aasma Day Aasma.Day@inews.co.uk
Victoria with her father, Bill. She describes his diagnosis as “a shock”.

Her dad’s Huntington’s diagnosis came as a shock to Victoria, who is a senior associate at the Slater and Gordon law firm in Liverpool – and even more so when she and her two siblings were told that there was a 50/50 chance that they would have inherited the disease.

Victoria made the decision to get tested to see if she would develop Huntington’s in the future. People with a history of the disease in their family can have a test to see if they’ll get it – but many at risk decide they would rather not know until any symptoms appear.

“I was 33 at the time; I had never heard of Huntington’s disease and I suddenly found out about it running in my family,” says Victoria. “I decided I wanted to have the test and then I could rule it out and not have to worry.”

Victoria confesses to i that she’d expected the tests would reveal she didn’t have the Huntington’s gene. “I just thought I couldn’t have it and I was not expecting that result to be what it was,” she admits.

“I had to be referred to a genetic counsellor, and had to have a minimum of three appointments before I could have the test. The genetic counsellor was excellent and after my third appointment, they took me for my test.”

The test for Huntington’s involves checking a sample of blood for the genetic fault that causes the condition.

Victoria went in with her husband Joe to get the results and to the couple’s devastation, they were told Victoria had inherited the Huntington’s gene.

Victoria Mullins and her husband, Joe Huntington's Disease case study Provided via WhatsApp to writer Aasma Day Aasma.Day@inews.co.uk
Victoria and her husband, Joe

“We were just shocked and speechless,” remembers Victoria. “We did not expect that to be the outcome. It’s so difficult as you go from hoping you’ll test negative to finding out you’ll definitely get Huntington’s disease in your lifetime.”

Even more heartbreakingly for Victoria, when her sister Carys Collard, 36, decided to get tested, her results also came back positive for carrying the gene for Huntington’s. Her brother Will Collard, 31, has chosen not to get tested for the disease at the moment.

“Part of me hoped that as I had inherited the Huntington’s gene, then my sister and my brother would be spared it,” says Victoria.

“I thought it would be my burden to carry and hoped they’d be fine. My sister having the Huntington’s gene too broke my heart more than my own.”

Victoria says she also feels anguish for family members who are deeply impacted by Huntington’s, even though they don’t have it themselves.

Her mother, Vanessa Collard, 59, has had to experience the agony of having her husband and two daughters diagnosed with the disease – with the fate of her son still unknown.

“It has been heartbreaking for my mum and is also hard for my husband Joe, but he feels he has to be strong for me,” says Victoria. “Even though they don’t have it themselves, there is a lot of collateral pain.”

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Victoria has been warned that the symptoms of Huntington’s disease usually start between the ages of 30 and 50 – but they can begin earlier or later.

Symptoms include difficulties concentrating and memory lapses, stumbling and clumsiness, involuntary jerking and problems swallowing, speaking and breathing. Full-time nursing care is needed in the later stages of the condition.

At the moment Victoria is asymptomatic, but she lives with the worry of when she’ll first start displaying symptoms. “There is a time frame of about 15 years of death occurring from first having symptoms,” she explains. “And as symptoms deteriorate, those years will not all be pleasant, as you gradually lose your abilities.

“I have no idea when I will become symptomatic. It could be at any time, as it’s usually between 30 and 50. Or I could be like my dad and not get symptoms until later in life.”

One of the huge decisions Victoria and her husband had to make was what to do when it came to starting a family, as they knew any child would have a 50/50 chance of developing Huntington’s later in life.

The couple, who have been married for three years, are currently undergoing IVF treatment using pre-implantation genetic diagnosis (PGD), which is used by people who have a known inherited disease so they can avoid passing it on to their child and future generations.

“We felt that if we could eliminate the chances of a child having Huntington’s, that was the best scenario, because there is a 50/50 chance of any children we have having Huntington’s.

“The IVF follows the usual process, but once fertilisation has happened, the embryos will go to the lab for testing and they will only implant embryos which are not at risk of developing Huntington’s.”

Victoria Mullins Huntington's Disease case study Provided via WhatsApp to writer Aasma Day Aasma.Day@inews.co.uk
Victoria has celebrated her life, and recently raised £5,000 for charity by doing a wing walk.

Despite this, Victoria is sometimes plagued by the fear that she will become sick soon after having children. But she says: “I don’t want to change my plans, as there’s a chance I could get to my dad’s age before I start getting any symptoms.”

After coming to terms with the shock of the diagnosis, Victoria’s thoughts turned to: “What can I do that is positive rather than dwelling on this and letting it defeat me?”

Consequently, she ended up doing a wing walk – and raised £5,000 for the Huntington’s Disease Association.

She has also signed up for research studies at the Walton Centre in Liverpool, which carries out regular cognitive tests, checks her mobility and does blood tests to track the progress of the disease.

For now, Victoria is determined to stay positive, and lives in optimism of a cure being found for the disease before it begins to affect her.

“I feel it would be very easy to let a diagnosis like this completely knock you,” she admits. “Sometimes, there are triggers such as watching something on TV and getting emotional, or seeing old people and wondering if I will ever get to their age.

“But I am determined that I can’t let it worry me, so I’m still going to keep living my life to the full.”

 For more information, go to the Huntington’s Disease Association

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