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HBCC 2018 - Hills of Hope 250

5 team members

Challenge complete

Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p]A warm welcome to The Heath Barnett Challenge - Hills of Hope page, we are raising money for Children with Cancer UK and the James Hopkins Trust. [/p][p][b]Our Story:[/b][/p][p]We are a group of friends and family embarking on an extremely challenging 1 day, 250 mile bike ride from Land’s End to Berkeley in Gloucestershire in aid of Children with Cancer UK and the James Hopkins Trust. We have created a challenging and truly epic route that embraces the steep and unrelenting landscape of the West Country, we will complete the entire route in just 24 hours.[/p][p][b]The Route:[/b][/p][p]The route will start with the toughest climbs of the entire route, taking in St Michaels Mount and Cornwall’s Iconic China clay pits. We will cross the edge of Bodmin Moor and skirt around Dartmoor, hitting the short, steep hills and descents that Devon and Cornwall are so famous for. We will cross the Quantock Hills where we will turn North and head for Weston Super Mare and 200 miles completed. Once through Weston Super Mare we will continue North and pick up the strong and unforgiving head winds from the Severn Estuary. We will hug the coastline and continue heading towards the stunning Severn Bridges, before turning North East and heading for our home town of Berkeley and the magical finish line at 250 miles.[/p][p][b]The reasons for the ride:[/b][/p][p]In May of last year our friend and team manager Craig sadly lost his brother Heath Barnett to Cancer aged 49 years, not once did Heath complain about his illness and he embraced every opportunity to do the things he loved. Heath only got sad and upset when he saw the Children that were undergoing treatment for Cancer. He said “it’s the Children who have Cancer I feel sorry for” as they have not had the opportunity to experience all the wonders life has to offer. This one comment has been the catalyst for this event, our aim, to simply make a difference. So in memory of Heath we are recreating a bike ride that Heath along with friends and his brother Craig initially completed back in 1991 where they rode from Sharpness / Berkeley in Gloucestershire to Land’s End over [u]3 days[/u]. This event is the inaugural event of The Heath Barnett Challenge Cup.[/p][p]In addition we also want to help, support and raise awareness of the James Hopkins Trust, the trust have been amazing with the care and support they have provided to Harry Freeston and his family, Harry has Dravet Syndrome.[/p][p]Why is the trust so important to us.[/p][p]My Name is Brett and dad to Harry. Harry was born July 2014 and at 9 months old he had his first Tonic Clonic seizure lasting 40 minutes. Harry made a full recovery in hospital after losing the function of his left side of the body.[/p][p]After a 3 day stop in the hi-dependency ward at Gloucester Royal Hospital, we had been handed our discharge paperwork and told every child is allowed one seizure without need for concerned. Just as we were collecting all our belongings Harry had a second seizure, this time lasting over 45mins and the start of our journey with Harrys condition. [/p][p]After some countless 999 calls and ambulance journeys to hospital and the daily struggle to control his seizures, in August 2016 we finally had the long awaited diagnosis….Harry has Dravet Syndrome. [/p][p]How the trust become [/p][p]1987 James Hopkins was born in Gloucester royal Hospital, but from birth James was suffering from a very rare neuro-muscular disease called myotubular myopathy and he needed round the clock nursing care. [/p][p]Sadly James was admitted to hospital in May 1989 with a chest infection, He seemed to be improving when suddenly he deteriorated and without warning he passed away on 29th May 1989 at the age of 20 months[/p][p]During James’s time with us, within the Gloucestershire area the only respite the family could get was when James went into hospital for a few days. [/p][p]Shortly after the passing of James, the family decided to have a little fund raise and that they would spend the money raised to hire a nurse for a family with a disabled child so the nurse could look after the child while the parents took a short break.[/p][p]And so began the James Hopkins Trust, established in 1989[/p][p]Today the Trust provides care for babies and children up to the age of 5 who have a life limiting or life threatening condition while supporting their families. They have helped over 500 children and their families in every corner of Gloucestershire[/p][p]The free nursing respite that is offered can be night or day in the family home or at our purpose built multi-sensory respite centre and gardens called Kites Corner.[/p][p]We are here to create very special, lasting memories at Kites Corner, which is filled with love and laughter[/p][p]Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant, the disease begins in infancy but is lifelong.[/p][p]Harrys condition means he has many different types of seizures and these range from [/p][p] • Myoclonic seizures[/p][p] • Tonic clonic seizures[/p][p] • Absence seizures[/p][p] • Atypical absence seizures [/p][p] • Atonic seizures[/p][p] • Partial seizures[/p][p] • Non-convulsive status epilepticus[/p][p] • Complex Focal Seizures[/p][p]Due to the severity of his seizures Harry has additional problems and these are as follows[/p][p] • Behavioural and developmental delays[/p][p] • Movement and balance issues[/p][p] • Orthopaedic conditions[/p][p] • Delayed language and speech issues[/p][p] • Sleeping difficulties[/p][p] • Chronic infections[/p][p] • Sensory integration disorders[/p][p] • cognitive disorders[/p][p] • Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)[/p][p]Harrys Syndrome means we have no warning and as such we have to give Harry essentially 1:1 supervision and care at all times of the day and night and because of his seizure types and rescue medication, only trained careers are allowed to look our Harry.[/p][p]The James Hopkins Trust are currently helping us by providing a home nurse for 4 hours weekly respite sessions along with regular 24hr overnight care at their Kites Corner facilities which enable us for a brief period spend time with our 6-year-old boy and do normal things as a family.[/p][p]So please help us raise money to enable the trust to continue providing care and support not just for my family but for all other families in the Gloucestershire area.[/p][p] [/p][p][b]We as a team would like to dedicate this event in loving memory of the following people[/b][/p][p][b]Heath Barnett, Lil Barnett, Mike Chappell, George Leitch, Andrew Leitch, Hazel Griffin, Ginge Fry, Jacq Cook, Maureen Allen, Len Smith, Graham Tainton, Pat Appleton, Steve Holpin & Chris Bartlett[/b][/p][p]On behalf of the entire Heath Barnett Challenge Cup 2018 Hills of Hope Team we thank you for your support. [/p][p] [/p][p] [/p][p] [/p]
HBCC 2018 - Hills of Hope 250 image 1
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Supporters

Feb 12, 2019

Anonymous

£6.25

Jan 25, 2019

KEYWAY LIMITED

Congratulations on your achievement.

£1000.00

Dec 20, 2018

Anonymous

Well done Guys - Nathan

Nov 22, 2018

Rickard interiors limited

£1000.00 plus £250.00 Gift Aid

Nov 16, 2018

Anonymous

A massive thanks to all that have helped make this a truly memorable experience and honour our loved ones and friends.

£470.00 plus £117.50 Gift Aid

Nov 7, 2018

Anonymous

Well done lads! From all at Limbirds

£1500.00

Nov 7, 2018

Stevenson Building Contractors.

Well done.

£750.00

Aug 21, 2018

Anonymous

£185.00 plus £46.25 Gift Aid

Jul 23, 2018

Will

£25.00 plus £6.25 Gift Aid

Jul 21, 2018

Dave Allen

Well done all - a real achievement. Dave xx

£30.00 plus £7.50 Gift Aid

Craig Barnett

Craig Barnett

Philip Illing

Philip Illing

Peter Blanch

Peter Blanch

Andy Heeps

Andy Heeps

Ian Leitch

Ian Leitch