But undeterred the family have decided they will still be doing a special walk - this time to raise funds for Derian House Children's Hospice in Chorley
Today Leo Cliffe from Coppull, near Chorley, will take the first steps on a special "round Britain" walk ... and he is asking the public to help him out.
The aim is that people walk or run a certain number of miles and contribute to the fund, so that the round Britain total of 1,000 plus miles can be achieved.
Leo, 19, who will be launching the walk on a treadmill at home, has a condition called Willliams Syndrome, a rare congenital disorder, and has faced many health battles in his life, including more than 50 operations.
His greatest joy would have been to see his mum Vicky, 43, marry stepdad Scott Carty, 43, on their planned wedding day in April . It was particularly important as at one time Vicky had been told Leo was unlikely to make it to his 16th birthday. But the pandemic meant the wedding could not go ahead.
Now Leo is inviting the public to join him on what has been dubbed his "Aisle to Isle" walk and donate £1 to his JustGiving page for every mile walked, jogged or cycled.
Leo said: “I’m really looking forward to raising money for Derian because the hospice holds a special place in my heart.”
Williams Syndrome affects around one in every 20,000 people in the UK. Leo attends Derian House for respite stays and the team at Derian also support his family.
Staff at the hospice note: "Although the condition has given Leo some extraordinary gifts – he is incredibly friendly, funny and has a flair for music, it has also led to heart and kidney failure."
They talk of his ability to light up a room and say it is no wonder he has many celebrity friends who have happily posed for numerous photographs with him.
Mum Vicky, a former pupil of Our Lady' high school in Fulwood, explained it was an awareness that the Coronavirus crisis has lead to a plunge in income for Derian due to the cancellation of numerous fundraising events, which made them decide to do their own fundraiser. The charity has had to close its shops and estimates overall it will lose more than £250,000 this year.
Vicky said: "Leo decided he was going to do this. Derian has been absolutely amazing. They've just been a rock."
It was October 2015, when Leo was just 15, that Vicky was told by doctors that Leo was unlikely to make his next birthday.
His devastated a family set about making Leo’s wishes come true with the time they had left. It was around this time that Scott, an old school friend, got in touch with Vicky when she appealed on Facebook for help moving house and love blossomed.
Six months later news of pioneering new surgery offered Leo new hope and on 14 March, 2017, Vicky’s 40th birthday, he was admitted to Great Ormond Street Hospital in London for a double kidney autotransplant, an operation which involves moving the patient’s own kidneys to a different part of the body.
The nine hour operation was a success and Vicky’s relief was huge.
But just days later, Leo developed complications. He was rushed back into theatre and in five days underwent three major life-saving operations.
Bouts of pneumonia and a collapsed lung followed. But finally, after a gruelling eight weeks in hospital, Leo was well enough to come home.
Vicky recalled: “It was a tough time, especially being so far away from home down in London. But my family and friends were amazing. They’re like a tag team and I always had someone with me helping and supporting me when we needed them. We’re very lucky.”
Leo went on to suffer more health complications and needed open heart bypass surgery and several more life-saving procedures.
In September 2018, during a family holiday to Florida at the Give Kids the World Village, a non-profit resort that offers free breaks to children with critical illnesses with their families, Leo made a special wish.
“Each of the youngsters on the break were granted one wish,” said Vicky.
“They were told they could write it out and it goes onto the ceiling in the Castle of Miracles in the resort – there’s 120,000 children’s wishes up there. Leo wrote on his wish that he wanted me and Scott to get married.
“On the last day of the holiday we went to visit the castle one last time and I asked Leo: ‘Would you like your wish to come true?’ He nodded and so I got down on one knee right there and asked Scott to marry me and he said yes!
She added: “Scott has been our rock. He took us both on knowing what the future held and has stood by us every step of the way and supported me through my darkest days of Leo being on life support.
."Although Leo’s condition remains life-limiting, he is here, and there’s nothing more I want in the world than to have him at my side while I marry my soul-mate.”
The wedding will now take place in October, 2020. There will be an added bonus. The service at St Andrew's, Cottam, near Preston, will be conducted by her father Deacon John Cliffe.
Vicky said: "My father is the Deacon at the church so he is marrying us. It's going to be so special. Leo will walk me down the aisle. There won't be a dry eye."
* Mick Croskery, who runs the community fundraising team at Derian House Children’s Hospice, said: “It’s just amazing to see Leo helping us out during such a tough time. The fact that he is giving back to Derian House by taking part in some fundraising for us has given all the staff a huge boost and a feeling of appreciation for the services we provide to him and his family. I know Leo will have me personally clocking up the miles to help him out and I can’t wait as I’d do anything to help such a wonderful kind-hearted young man.“
* Derian House Children’s Hospice looks after more than 400 children and young people with life-limiting conditions, from across the North West. It costs £4.8 million to run the hospice for a year, with just seven pence in every pound coming from government funding.
See www.derianhouse.co.uk/derian-events/doitforderian to find out how to help fund raise for Derian House or email [email protected] .