Back in 2015, we were told the devastating news that nothing more could be done to save Leo from the inevitable. After over 30 surgeries, the complications outweighed the possibilities of extending his life. Friends, family, the Foundation and other charities rallied around to raise money to make his wishes and dreams come true. We visited Lapland, Disney and went to concerts and football stadiums. We are eternally grateful for what every single person did to make Leo live his best life!
However, it turned out that Great Ormond Street Hospital (GOSH) never gave up on him and 18 months later they believed that pioneering surgery was worth a try.
In 2016 Leo endured two days of lifesaving vascular surgeries. He was kept in ICU after the first day then back to theatre the next day. He left hospital a week later but unfortunately, the operations weren’t enough to widen Leo’s renal arteries to get enough blood supply to his kidneys and his blood pressure remained dangerously high.
In 2017 a kidney auto transplant (transplanting kidneys to other arteries in the body) took place. The surgery was 13 hours long and came with great risks. It was my 40th birthday (I thought, if they save him, it would be the best present ever). After lots of complications and setbacks we were discharged four weeks later. During this time Leo was made a WSF Ambassador. He was so proud and it goes without saying that I was incredibly proud too! We went to the convention at Butlins in Skegness, and we had a wonderful time meeting new families and sharing our stories.
By 2018 it was clear that one of Leo’s transplanted kidneys wasn’t working, they said that removing it would bring Leo’s blood pressure down. We went to GOSH for preoperative tests only to discover that his carotid arteries were now closing. His brain was slowly being starved of oxygen and he was highly likely to suffer a stroke. A painful decision was made to try a carotid artery artificial bypass surgery (this meant a second open heart surgery for Leo). The benefits outweighed the risks and surgery went ahead exactly one year after the kidney auto transplant. Once again Leo suffered lots of complications and setbacks but three weeks later, we were home. Leo smashed it again!
Six months later scans and tests were done to see what was happening with his kidney that wasn’t working, the news was devastating. It had become attached to his spinal cord, removal could be catastrophic or leave him paralysed. We made a pain staking decision to say NO MORE.
We went on to have a wonderful holiday in Disney where we me up with our friends Kadi and family from Liverpool (Kadi has WS). I proposed to Scott my partner (who was my rock throughout Leo’s journey). We were due to marry in April 2020 but covid put a stop to that. Leo was to walk me down the aisle and my father (who is a Deacon) was to marry us.
During Lockdown, Leo decided to exercise on our treadmill (we couldn’t leave the house of course). He decided that if he couldn’t walk me down the aisle, he would walk the equivalent of the British Isle’s. He went on to raise over £6,000 for Derian House Children’s Hospice (where he goes for support and respite). I was so very proud of his achievements.
Eventually, on 15th August 2021 (after three failed attempts) I married Scott – the day I thought would never happen! Leo finally walked me down the aisle and my father married us. It was without a doubt my proudest, happiest day of my life! Bethany Leo’s girlfriend, came along with all our close friends, WS friends and family. It really was amazing.
I wanted to share Leo’s journey over the last seven years to show that our kids are fighters. Even when you think that there is no hope, have faith. Sometimes risks are worth taking but only you can make that decision for your child.
If, like Leo, the risks pay off, when they reach adulthood (which I never thought he would) then they can make decisions with your help too!
Our journey has been unbelievably tough but as Leo’s mum I can honestly say it’s been worth every single minute of being by Leo’s side. We have a fantastic family, wonderful friends and the Foundation to thank for supporting us. Leo turned 21 in November and was surrounded by everyone who loves him, he dressed as his idol Freddie Mercury!
As Leo would say, thank you for reading our story, love from me and WSF Ambassador, Leo Cliffe x