Tributes paid to inspirational "butterfly children" who died within two days of each other (From Bournemouth Echo)
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Tributes flood in after EB sufferers Harry and Cody Churchill die within two days of each other
8:38am Monday 18th March 2013 in News
TRIBUTES have been paid to two 'inspirational' young brothers who have died within two days of each other.
Their parents were at their bedside.
Both boys suffered from a debilitating genetic skin condition and had been battling an infection.
They both had epidermolysis bullosa, or EB, which causes their skin to blister.
They were known as butterfly children, because of the fragility of their skin.
It is so serious that doctors predicted neither would make his first birthday - with round the clock devoted care from their parents Steph and Chris they were living their lives to the fullest.
But both youngsters had had a serious infection in the days before they died.
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The family have asked for their privacy, but in a post on Harry and Cody's Facebook page they wrote: "As we all know Harry and Cody had a bond like no other but I don't think anyone really understood the bond they had!
"On the 13th March after long and hard fight Harry passed away peacefully at his favorite place Julia's House. As hard as it was we then had to go back to hospital as Cody fell ill, on the 15th March cody flew to heaven to be with his big brother!
"Losing two children in two days is anyone's worse nightmare the only comfort we have is knowing they are reunited as one! Cody couldn't live with out Harry their bond was far too strong ♥ love u always boys ♥ mummy and daddy x"
Friends and fundraisers have spoken of the amazing little boys. Harry would have turned four in April.
“Harry and Cody were two amazing young children, they were a total inspiration,” said Adam Murry, AFCB Bournemouth director, charity fundraiser and close friend.
“We have worked closely with Steph and Chris and we are all devastated. Both boys had been trying to fight off an infection but they just couldn't make it.”
He said there would be a minute's applause for the boys at this Saturday's home game at the Goldsands Stadium.
Harry, who had recently started at Victoria School, had become well-known locally, appearing in the Echo after his parents spoke out to raise awareness of his condition after they were subjected to ignorant staring and abuse in public.
Harry's condition worsened and he was admitted to Poole Hospital last Saturday. He was taken to Southampton Hospital for a short while, then transferred to Julia's House, a place he knew well from respite visits.
The Echo made this video with Harry in 2010
Mum-of-four Emily Kelly from Poole was so touched after initially reading Harry's story she started a fundraising campaign to buy him an electric wheelchair.
The response was so incredible that they smashed their £3,600 target in just 10 days.
She told the Echo: “It's hard to take in. They touched so many people in their short lives. I was thinking of all the good that has come from knowing them.
“They must have had so much pain. With everything they went through in such a short amount of time.”
She said the family were an inspiration adding: “They have been through so much - to lose their boys at this age - I can't even imagine.”
Family friend Rebecca Way, who has raised thousands for the family with sponsored walks and fundraisers, said: “My heart is broken - I have lost my butterfly buddies.” Rebecca is planning a 26-mile walk to raise money in memory of the boys.
A Facebook page has been set up to help raise money towards the funeral costs. Anyone who would like to donate towards the cost of flowers and headstones can give via paypal to firstname.lastname@example.org.
Anyone who wishes to donate to a charity is asked to support Julia's House.