Cornish Toddlers Appeal reaches £100,000
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.
This 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 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 as well as being supported by Big wave surfers
to Boxing legend Frank Bruno it’s 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.