Published: 00:01, 15 May 2018
| Updated: 08:17, 15 May 2018
The family of a nine-year-old boy is once again hoping to muster worldwide support to find a cure for the terminal disease he has been battling for six years.
Ethan Fanneran-Burley was diagnosed with Mucopolysaccharidosis (MPS) type 6, which only affects a handful of people, just before his third birthday.
He is under the lifetime care of Great Ormond Street Hospital, had lifesaving surgery on his spine last year and undergoes intravenous enzyme replacement therapy on a weekly basis.
Ethan’s mother, Katrina Fanneran, and stepfather, Kevin Mullins, have arranged for people to wear blue for him today to raise money for the MPS Society.
In addition, Mr Mullins completed the Isle of Wight Challenge on Sunday – a 24-hour, 106k walk around the island.
“Last year we walked 192 miles across the country and people were talking about the pain we were going through, but that pales in significance to what Ethan’s been through,” he said.
“The MPS Society puts a lot of work into clinical research, which he’s benefitted from.
“He’s started a new course of medication, which is not a cure for his condition but it lessens the damage the disease does. It came from research and information shared by the charity.”
Mr Mullins estimates that Ethan has had more than 500 appointments, 340 enzyme replacement therapy infusions and been under the knife more than half a dozen times.
Despite this, his parents have attempted to shield him from many of the heartbreaking realities of his illness.
“He doesn’t understand how sick he is,” Mr Mullins said. “He knows he has a condition, he does know there isn’t a cure for it, but he doesn’t know that his disease is terminal.
“Until a few years ago he thought everybody had a weekly infusion on a Tuesday and that every person goes to Great Ormond Street a lot.
“It wasn’t until he started going to sleepovers with friends and saw that they weren’t taking medicine when he was that he started to notice a difference.”
He has a number of skeletal abnormalities around his body, which have resulted in him being susceptible to injuries.
He is not allowed onto his school’s playground during break times and instead has to take a selection of friends to a separate area, and has not taken part in a PE class since the surgery on his spine.
“He also had surgery on his knees and wrists at the same time in 2014,” Mr Mullins said.
“The surgeons wouldn’t do that to anybody else, but because he’s difficult to treat they have to do as much as they can in that small window. During the recovery he had a zimmer frame that he couldn’t even hold onto for support, he had to use his forearms.
“His next operation will be on his knees because the plates put in there are now bending his knees inwards”
The family has set up a JustGiving page, which has already raised £2,840 for the MPS Society.
Sky Sports News presenters and other people from around the world are expected to wear blue today to raise awareness.
To support Ethan’s campaign, visit www.justgiving.com/fundraising/ethanmpsultrachallenge.
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