Otto’s parents are intent on making memories as well as cash for charities
Ella Burton and her baby son Otto Sparkes(Image: supplied image)
A special rugby game kicks off in Hull on Saturday, July 25, with an eight-month-old Hull baby as its inspiration. The match at Hull Wyke, Bricknell Playing Fields (HU5 4LN) will kick-off at 12.30pm (gates open at noon), with entry by donation.
The gate takings will be going to Life For A Kid, while special “Otto” match shirts and rugby balls, bucket collections and even sponsored headshaves will be helping Otto Sparkes; the charity Krabbe UK, and Martin House Hospice, the children’s hospice where Otto and his parents, Ella Burton and Keiron Sparkes, receive support.
Otto suffers from a rare and fatal condition called Krabbe leukodystrophy and his rapid condition means he is sadly unlikely to live beyond the age of two. His parents, family and friends are making every effort to ensure memories are made in the time he has – and to bring positivity to the struggles of daily life by helping to make a difference to others.
Ella said: “If anyone is a fan of rugby it’s going to be a good event to be at.” Hull Wyke’s “Otto’s Allstars”, with Otto’s dad Keiron on the team sheet, will be taking on Rugby League AllStars, made up of ex-professionals, in at least one match.
Guest barber’s, Cuts by Kneesh Ryan Bennett Hair, will be attending. “There will be a barbecue going and an outside bar, as well as the inside bar at Hull Wyke,” Ella said.
“There will be bouncy castles and fun things to do for the kids and some signed rugby shirts being raffled. It’s open to anyone who would like to turn up – I think there will be quite a lot of people there. It’s going to be a good day for us as well.”
The west Hull mum has previously spoken poignantly of her rainbow baby who she now knows she is likely to lose when he is around two-years-old. The baby boy has no enzymes that break down the fats in his brain, leading to a toxic build-up.
This causes him to be extremely irritable, have severe muscle weakness and stiffness, and feeding difficulties. He will eventually lose the ability to see and hear.
The couple have heard their baby’s laugh only once – he stopped smiling in March – and he needs feeding every three hours. Otto sleeps on Ella every night as it is the only way the family get even a few hours of sleep.
Ella said her son was being sick and they were “having to change all his meds and his milk all the time”. “I don’t want anyone else to go through this,” she said.
“It just feels really isolating. People don’t know about the day-to-day; it doesn’t feel like living some of the time, but these are the cards we’ve been dealt.
“Even when you do get a break, you are constantly catching up with your own emotions.” Ella said: “We go to Martin House – you never think you know about these types of places until you need them – and that’s why we are doing bucket collections at the game for them.”
Keiron recently undertook a Three Peaks challenge – “he really did his knee in afterwards and he was worried he might not be able to play in the rugby match” – to raise money and awareness, and Ella’s friend Chloe Paterson is running the full length of the Trans Pennine Trail (around 215 miles) between September 7 and 11.
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