Nearly four years after Cornish toddler Joe Way died, his story continues to inspire people. The amount of money raised in his memory has now reached £100,450.00 and has helped 20 different charities.
Joe Way, who was born with a rare genetic condition, was labelled a 'miracle boy' after surviving meningitis, a potentially deadly skin reaction, numerous superbugs and complete organ failure.
A website was set up to tell his story, raise awareness of his conditions and to help raise money for 20 different charities through holding fundraising events including the annual Joe Way Paddle for Life in Newquay harbour.
Joe's rare genetic condition Angelmans Syndrome was not life limiting - but at 18 months old he had a reaction called Steven Johnson Syndrome.
SJS can be triggered by a drug or virus. Although the first bad reaction was thought to be drug related, Joe started a new drug and over the period of two years his final reaction was viral triggered with his body fighting against other problems.
The website which has told the 4 year old toddler's story has inspired fundraising and donations from as far as America, Japan and Australia. Over 20 charities have benefited ranging from local to national with the main benefactor being Little Harbour Cornwall's new children's Hospice which has received £70,000.00
Since May of last year Joe's Appeal has been the Newquay Mayor Andy Hannan's chosen fundraising group and £11,900.00 has been raised.
The Way family never benefitted from staying at Devon's Little Bridge House, also run by Children's Hospice Southwest as Joe was always too ill to travel. This is why they have supported the building of Cornwall's only children's hospice over the last three years.
The family attended the media gathering for the first announcement of the land being donated and came full circle this month when they spent two nights at Little Harbour. Matt Way said "Our idea of what the support and the quality of care would be like has been blown out of the water, its such a positive place and we could see first hand how good the care is along, with the support for siblings and for parents who get the opportunity to recharge and carry on with what is one of the hardest experiences a parent will ever face".
The family could not praise the staff enough for the job they were doing and the positive and caring atmosphere that has been created at Little Harbour. Matt continued "we now realised how much this would have helped us when Joe was alive and although we have always said that Joe had a dignified end to his life, the surroundings of the hospice would have been of great comfort in those last precious hours and minutes".
'Team Joe' who are made up of friends and family have always kept the fundraising fun and exciting from big music nights, skydives, surf competitions, on line promotions and support from big international brands.
The website has been supported by international surfing pros Ben Skinner, Tom Butler, Alan Stokes, Olli Adams and Johnny Fryer along with Actor Ben Richards from TV's The BILL and Footballers Wives. Cornwall's international singer James Morrison has also supported the toddlers appeal.
Actor Ben Richards said "'After meeting Joe's family and learning about his short, but inspirational life, I felt I had to get involved in any way I could to raise vital funds for Joe's appeal. I ask you to watch Joe's video, see this beautiful smiling boy, with so much to deal with, and I promise, you'll want to get involved'.
Events have also been supported by local and international businesses including O'Neill, Nike 6.0, Relentless and Animal. The media ideas just keep coming with 2000 followers on facebook, Dean Woods churning out podcasts which are on iTunes, twitter, video message from singer James Morrison, live streaming on line during the annual Paddle for Life and a double decker bus that is completely sign written travelling around Cornwall.
Joe's small banner with his web address and smiling face has gone around the world 8 times a simple idea that just grew as people joined in spreading the word about a special little boy with a big heart and a bigger smile.
Claire Way, Joe's mum said "He was and will continue to be a special little boy who can still bring out the best in anyone who takes the time to read his story and we are very privileged to be his parents".
Special thanks goes to everyone who has helped Joe's story reach so many new people including IT-ok, P&J Print, Perran Signs and Graphics, Tiger24 and Scott Dickinson creative.
Joe's annual paddle will be held on Thursday 21st of June at Newquay harbour and is open to all ages and abilities. It's a community event with lots to do including a visit from Titan the Robot and live music. For more information go to www.joewaypaddle.co.uk