When Gillian McNab jumped out of a plane, fell 10,000 feet, and pulled the ripcord on her parachute, she was able to cross skydiving off her bucket list.
Gillian, a nurse and mother-of-three, has vowed to live life to the full after being diagnosed with the gene for Huntington’s Disease eight years ago. Determined to keep a positive attitude, she drew up a list of adventures to embark on before the inevitable onset of this cruel disease.
“I don’t want to have any regrets when things become challenging,” said Gillian, 49, from Lanark.
Huntington’s is caused by a mutation of the HTT gene, which creates a toxic protein that gradually destroys vast tracts of the brain, eventually removing all mental faculties. If one parent has the disease, there’s a 50 per cent chance of inheriting the gene. Symptoms on average begin in the mid-40s and it usually takes around 15 years until end of life.
Gillian’s mother had Huntington’s and she knew there was a 50 per cent chance of having the faulty gene, but didn’t feel ready to be tested until her marriage broke up in 2011. She wanted to know whether she was going to have Huntington’s when she became a single mother to her three daughters, now aged 18, 16 and 12.
While she was waiting at home for the test results, she had champagne on ice to celebrate if she was given the all clear. When the bad news was broken, she decided to celebrate life instead of falling into despair.
“Hearing those words was like being hit by a train. I had a bottle of Bollinger chilled in case it was good news. I thought that life is too short not to drink champagne, so I invited my friends around and we laughed and drank champagne.
“The next day, I went to Alton Towers with my nephew and had a great day out. The rest of my life is precious and I want to make the most of it.”
Seize the day has become her motto and she has drawn up a bucket list that she is working her way through, including travelling to Australia, riding pillion on a motorbike and riding every rollercoaster in the UK. But the high spot has been her skydive, which she completed last week.
“I was terrified at the thought of jumping out of a plane but it was an amazing experience and the biggest adrenaline rush I’ve ever had.”
Gillian did the skydive to raise money for the Scottish Huntington’s Association, a charity that supports families affected by the disease, and so far has raised nearly £5,000.
While there is no cure for the disease, clinical trials targeting the gene are underway, and preliminary results have, for the first time, demonstrated success in lowering the toxic protein it makes.
“The Ionis drug – a type of antisense oligonucleotide drug that interferes with the work of DNA – is undergoing pharmaceutical trials. It’s possible the drug may suppress the disease and slow it down by reducing toxic proteins by 50 per cent,” said John Eden, CEO of the Scottish Huntington’s Association.
These medical advances have given Gillian hope that the disease will be delayed and symptoms managed, and that her daughters will benefit from new treatments if they have the gene.
She said: “I’m in good health and love my life and despite my diagnosis of HD, I wouldn’t change it. I feel empowered knowing what the future holds and it’s made me appreciate life more and live every moment with gratitude.”
Gillian’s work as a hospice nurse has also informed her attitude.
“I’ve been lucky enough to have met and nursed inspiring people who have shown great courage and stayed positive through even the most difficult times and the end of life. This has left me feeling braver about my own future and determined to do everything I can to try to stay as positive as possible.
“I love my job and I’m humbled, touched and moved on a daily basis. My colleagues are so supportive, which helps as well, and my family and friends are everything to me. My three girls are my world.”
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