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Jamie and Kyle Hartley raised £5,794.43 from 115 supporters
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Closed 30/05/2017
Weʼve raised £5,794 to help a loving family who have two terminally ill sons with Juvenile Huntington's Disease. Join bikers and friends to help reach the target!
- Blyth, Northumberland, United Kingdom
- Funded on Tuesday, 30th May 2017
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Story
This page is for the Biking Community & anyone else who wishes to help a very deserving family from Blyth, whose two sons were both diagnosed with a rare, fatal genetic disorder in January 2008.
Kristina and Mark Hartley received news that no parents should ever hear. Their two sons Jamie and Kyle, at the time aged 13 and 15, had tested positive for Juvenile Huntington’s Disease (JHD), a slow progressing hereditary disease which causes brain cells to die. It is a life-limiting genetic disorder for which there is no cure.
It was a diagnosis that Kristina and Mark expected, but the tests revealed that both boys had an aggressive form of JHD, which is why they displayed the symptoms in their early teens.
Over the years Jamie, now 22, and Kyle, now 24, have lost life skills and sadly the end of Jamie’s short life draws ever closer.
Juvenile HD is a devastating disease, not just for the individual affected but also for the entire family.
Mark shouted out on North East Bikers FB Page to see if anyone could give Jamie a ride to remember. After speaking to the family and learning they not only face losing one, but both sons, also the other children who stand to lose their brothers, this page was quickly established. Kyle is now at the same stage Jamie was a year ago, so the family will sadly face this awful scenario again in such a short time. We are asking the amazing Biking Community to kindly ride with this family through this heart wrenching time. We urgently need your help as because the boys were diagnosed with JHD, unfortunately no life insurance could be set up to cover the inevitable funeral costs.
Mark & Kristina only wanted support with a ride out but we insisted on setting up a fundraising page to raise enough funds to cover the boy’s funerals with the remainder going to the JHD Charity. The Hartley family have enough to endure with an extremely hard journey ahead without worrying about the finances - so let's band together and help in any way we can
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Supporters
115
June Woodhouse
May 19, 2017
With love and compassion. June & Frank
£20.00
Samantha Dembry
May 17, 2017
Good luck x
£10.00
Eithne Curbishley
May 9, 2017
God Bless you all.
Trish Kent
May 2, 2017
Love from all at Northumberland Scooter Club
£305.00
Mark Brogan
Apr 30, 2017
£25.97
Alison Sands
Apr 27, 2017
From Alison's Sands. For jamie & Kyle
£10.00
Robert Judge
Apr 27, 2017
Matt's working on the video...
£50.00
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Jamie and Kyle Hartley
Blyth, Northumberland, United Kingdom
Two spirited brothers battling the same rare, terminal condition; Juvenile Huntington's Disease. With just two years between them, Jamie and Kyle, along with their amazing rock of a family are in need of help to enable them to enjoy what precious little time they have left.