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Around three million people in the UK have kidney disease

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Grandad set to swim the English Channel

27 May 2020

A life or death phone call when his granddaughter was just five days old, has prompted a Devon mental health nurse to swim the English Channel to raise money for kidney disease research.

Andrew Butler has put himself through gruelling training since 2017 to prepare for the famous swim and says little Rosie is his inspiration.

Andrew, 57, said: “Rosie was just 10 weeks old when she had both kidneys removed to save her life. She is on dialysis until she is the correct size and weight to be able to have a transplant from her father Luke, my son.

“When the going gets tough and I am hurting in training or during the swim itself, I know it is nothing compared to the courage Rosie, her parents and other families deal with on a daily basis, living with kidney disease. If I get a wobble of nerves, that thought keeps me strong.

“Luke and Hannah are incredible parents, second to none! They have faced Rosie’s illness with calm courage. They’re my heroes.

“As a grandad, knowing your grandchild could die is awful. You feel so helpless. Luke, Hannah and families were all thrust into an alien world. The shell shock of it all was difficult, but it pushed me to do something positive to raise money,” said Andrew, of North Devon.

Rosie Butler
Rosie Butler feeds her doll

Rosie, who will be three in June, fell seriously ill within a week of being born and had emergency surgery to remove her kidneys, after being diagnosed with the rare syndrome, congenital nephrotic syndrome.

The first five months of her life were spent under specialist care at Bristol Children’s Hospital and ever since, she has been on home dialysis which Andrew says can be “brutal” for such little ones.

Home dialysis involves being connected to special equipment during the night as Rosie sleeps. She is fed via a feeding tube, with the nutrients kept in a mini back-pack, which she wears during the day.

Andrew, a mental health nurse, said: “Rosie’s world has been one of daily dialysis, injections and hospital. It is relentless. Her dad Luke is waiting for the date when he can donate one of his kidneys to Rosie.

“Once she has had the transplant operation, we hope it will give her more freedom, plus a better quality of life for the whole family. It impacts on them all, including her big brother Henry (4).

“As her grandad, it is difficult watching their little family go through so much – which is why I’m doing the swim. “

Andrew had originally intended to do his English Channel swimming challenge in the week commencing June 11, depending on weather conditions. However, with the coronavirus lockdown impacting his swim training, Andrew has had to adapt his regime by using a tether and a pop-up pool. He now hopes to complete his challenge later this year or next year.

The Channel is approximately 21 miles as the crow flies, but in reality, participants cover a lot more swimming in an “S” shape owing to tidal impact. The fastest was Australian Trent Grimsey in six hours and 55 minutes in 2012. The slowest was Jackie Cobell who was swept off course and ended up swimming some 65 miles. Andrew is hoping to complete the swim under 18 hours.

Since 2017 he has adjusted to no longer swimming in a wet suit and instead a costume with cap and goggles, as required by the English Channel swimming rules. He has suffered injuries, for example to his shoulders, but has regular massage to help.

Meanwhile, Andrew hopes his ongoing cold water acclimatising which has included swimming in extreme temperatures as cold as 3c, and successfully completing an official ice mile in January 2019, has set solid foundations for coping with the risk of hypothermia which often prevents a successful crossing early in the season.

Andrew is one of only around 352 people in the world to have successfully completed an official ice mile. Andrew said: “I’ve always gravitated to water and in my younger days was a lifeguard, but I am not from a club or competition swimmer. I am just somebody who has always enjoyed open water swimming. Swimming the English Channel is going to be the biggest challenge of my life.

Meanwhile, Andrew hopes his ongoing cold water acclimatising which has included swimming in extreme temperatures as cold as 3c, and successfully completing an official ice mile in January 2019, has set solid foundations for coping with the risk of hypothermia which often prevents a successful crossing early in the season.

Andrew is one of only around 352 people in the world to have successfully completed an official ice mile. Andrew said: “I’ve always gravitated to water and in my younger days was a lifeguard, but I am not from a club or competition swimmer. I am just somebody who has always enjoyed open water swimming. Swimming the English Channel is going to be the biggest challenge of my life.

“Bristol Royal Hospital For Children have been brilliant. I’m blown away with their support and care. Also, the Ronald McDonald House at Bristol, which provides free accommodation for families of critically ill children. Research into kidney disease is so important. I hope modern medicine may mean things will be easier for Rosie, and other children going through this in future years.”

To support Andrew’s challenge visit his fundraising page.

Andrew Butler
Andrew Butler at sea
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