Victoria Thomas had no idea her life was about to change forever during what should’ve been a normal workout. One minute, the then 35-year-old was lifting weights at a boot camp session, the next she felt dizzy and told a friend it felt like all her energy had just drained from her body. Moments later, she collapsed.
Her heart had stopped. Paramedics were on the scene within minutes and began CPR, but things weren’t looking good. Victoria was clinically dead for 17 minutes, reports The Daily Star.
“When it happened, it went black and there was nothing,” she said. “Then I became aware of looking down at my body. I was floating near the roof and could see myself lying on the gym floor. My first thought was that my legs looked really fat.” Looking back at a photo taken just before she collapsed, she realised they had been swollen.
“I didn’t see a light or feel peaceful, I was just watching myself, and I could see some yellow machines around me.” Against all odds, her heart started beating again, and paramedics didn’t give up. “They never gave up on me… it had come completely out of the blue.”
Victoria was rushed to Bristol Royal Infirmary and put into a coma for three days. She later had a pacemaker fitted in case her heart stopped again, which it did, several times. Thankfully, the device shocked it back into rhythm each time.
She was back playing netball just three weeks later, saying the defibrillator gave her the confidence to return to normal life. In 2021, she became pregnant, but the pregnancy put huge pressure on her heart. By 24 weeks, she had already suffered repeated cardiac arrests.
That’s when doctors finally diagnosed her with Danon disease, an incredibly rare genetic condition caused by a faulty LAMP 2 gene. It affects fewer than a million people worldwide. “When I read the letter from the genetics team telling me what I had, I was 24 weeks pregnant with Tommy and I was so shocked, I couldn’t take it in.”
Doctors wanted to deliver Tommy immediately, but she managed to hold on until 30 weeks. “By then, I couldn’t breathe properly because of the fluid building up in my body, so I had to have an emergency caesarean.” Luckily, Tommy was fine.
As the months passed, Victoria’s condition worsened. By the time Tommy was six months old, she couldn’t even get up the stairs. A check-up in April 2022 revealed her heart was only functioning at 11 percent. “I asked the doctors how long I had left and they told me just a couple of months. It was devastating.”
She was put on the urgent transplant list and had to stay in hospital. She only saw Tommy when her sisters brought him to visit. Twice, she was told a heart was available, only for it to fall through. “I’d given up all hope.”
Then, in April 2023, the miracle happened. A suitable heart became available, and the transplant went ahead at Queen Elizabeth Hospital in Birmingham. She was back home by May.
Now 41, Victoria is thriving. She’s playing netball four times a week and is set to compete in the World Transplant Games in Germany. Tommy is now three, and tests show he doesn’t have Danon disease — and neither do any of Victoria’s relatives.
She credits her donor’s family with saving her life. “I feel like I’ve been given a second chance at life and to be a mum. It’s the greatest gift I could ever have asked for.”
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