Kentish Gazette Canterbury & District
We’re all wearing blue for our precious boy
People from around the world have got behind the family of a terminally ill boy in the hope of finding a cure for his degenerative disease.
In a heart-warming show of support, mother Katrina Fanneran arranged for friends, family and even strangers to wear blue for her son, Ethan, to raise awareness about the genetic disease mucopolysaccharidosis type 6 (MPS).
The eight-year-old from Canterbury was diagnosed just before he turned three and has damage to major organs, including his liver and heart, as well as his spine, neck, airway, eyes and ears.
He is under the lifetime care of Great Ormond Street Hospital and undergoes a weekly treatment of enzyme replacement therapy by intravenous infusion, which is aimed at slowing down the progression of this disease, which affects just 23 people in the UK.
He has also undergone numerous major operations.
But his mother, from Scott Avenue, says her beautiful little boy “stands defiant”.
She said: “He is mildly aware of his condition but endures treatments, therapies and other medical interventions like they are a piece of cake.
“He gets upset and frightened, of course, but a little encouragement from mummy, daddy and his little sister and brother and lots of hugs and kisses and he soon comes round.
“He is the bravest little boy and he inspires us every moment of every day.
“He gives us something to live and fight for, and he is our little soldier.”
In a bid to help other families in her position, Katrina has launched a fundraising campaign to raise crucial funds for The MPS Society and projects researching cures.
A Go Fund Me page has already raised more than £14,000.
As part of the drive, on Monday she held a Wear Blue for Ethan day to raise the profile of degenerative disease.
People from around the world posted pictures of themselves wearing blue on social media in an emotional show of support.
Ethan’s school Bridge and Patrixbourne joined in with the huge campaign, all wearing blue and raising £500.
The pupils were among thousands who showed their support by posting a picture on the Facebook page wearing the campaign colour.
Sky Sports News presenters even wore blue on air in a nod towards the campaign.
Katrina added: “Ethan is an amazing, strong and beautiful little boy.
“He is full of life, love and laughter and our fight is to keep him that way for as long as possible.
“Our hope is that all who can, will donate to this page, and all the money raised will be split between the MPS Society and specific projects researching cures for MPS type 6.
“All the money raised will help other families like ours and more importantly it will help fund research in the hope of finding a cure.
“We live in hope, hope for a cure, hope for a future, hope for many more tomorrows.”
To support Ethan’s campaign, visit www.gofundme.com/ Ethansmps