Kind supporters are pulling out the stops to help make memories for Otto’s family and also to help a charity
Ella Burton and Keiron Sparkes, of west Hull, with their baby son Otto Sparkes(Image: Martin Steel Photography)
A mum from west Hull has spoken poignantly of her rainbow baby who she now knows she is likely to lose when he is around two-years-old. Six-months-old Otto Sparkes has been diagnosed with a rare and fatal condition called Krabbe leukodystrophy.
It means 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, feeding difficulties and that he will eventually lose the ability to see and hear, said his mum, Ella Burton.
“This is a rapid condition, and the doctors have said there is no cure for it,” said Ella. “We’ve been told he has only 18 months maximum left to live.”
Ella and her partner Keiron Sparkes face the dreadful inevitability of losing their first-born child when he is just a toddler. The couple have heard their baby laugh only once; he needs feeding every three hours and sleeps on Ella every night as it is the only way the family get a few hours of sleep at all.
Ella said she at first put her and Keiron’s concerns about Otto down to being first-time parents and “not knowing what to expect” but she also said “I knew something wasn’t right”. She said: “Our health visitor was getting concerned he wasn’t moving or kicking as a baby should be. He was smiling, and we heard one laugh, but that all stopped in about March time. His neck control wasn’t there either.”
Ella said: “He started having these jolting episodes; they would wake him up and he would become really distraught.” The worried parents took Otto to hospital where his episodes were put down to “normal baby startle reflex”, Ella said, and Otto was discharged, which she “did not feel happy about”.
Later, when his symptoms increased and he started becoming “really stiff”, Otto was taken back to hospital again where Ella said doctors were “quite concerned”, though MRI and EEG tests both came back clear. “I always felt it in my gut that something was wrong,” said Ella.
Otto was transferred from Hull to Leeds [Children’s Hospital] where he underwent more tests. “The doctors there said we were looking at a very serious condition, and they were very concerned about him, but at that point they still didn’t know exactly what was going on.
“Otto was taking over an hour to drink a bottle and projectile vomiting quite often. I thought it was possibly normal because we’d never had a baby.
“They took Otto’s blood and our blood for genetics testing. On Monday last week the doctor told us that it was Krabbe leukodystrophy.
“I’d never heard of it. It’s something that affects only one in 100,000 to 250,000 babies.
“The doctor has explained from our blood results that there is a ‘spelling mistake’ in both my and Keiron’s DNA and that it’s very unfortunate we both have this same mistake that has created this in Otto.
“He is our rainbow baby, which is even worse. It’s just awful.”
Otto is currently able to be at home “on lots of meds” and with a feeding tube, and his mum and dad are planning to make as many memories as they can with him, and have been put in touch with Martin House children’s hospice. “We’re doing half-birthdays now; we’d like him to have as many birthdays as possible, so we’re having a six-month birthday on June 13.
“It’s going to be a party, at Hull Wyke rugby ground, a big gathering so we can get as many people around him as possible. We are going to try to take him to Disneyland in America – we don’t know if it’s going to be difficult because of the insurance and things – but we are trying to make it happen.
“What we really want to do is to raise awareness around this disease and the symptoms that other babies may present in the future, to help other families. Things like being extremely irritable and with an extreme startle reflex; vomiting; feeding difficulties; being very hot and very stiff.
“Otto’s thumbs are always locked inwards into his palms and he has tremors in his hands and feet. He has started having vision problems – he’s not looking directly at us – and he’s lost all types of motor skills.
“He has not got head control but his body is stiff. He has lost all kinds of physiological things and has regressed mentally. He doesn’t smile anymore and as time goes on his body will shut down.”
Ella said: “Leeds [hospital] has been fantastic and I can’t thank them enough. When we stayed there they gave us a little apartment and that really was helpful.”
Another positive for the family has been the outpouring of support from people who want to help. “Keiron said he didn’t realise how many friends he had,” said Ella.
“People are doing all sorts of things. Some are wanting to raise funds to help us make memories with Otto; others are raising money for the charity Life For A Kid.
“We can’t believe the amount of people who are coming together to help us.” Among the activities going on are a 215-mile run by Ella’s friend, Chloe, along the Trans Pennine Trail in August, with over £7,000 already pledged; boxing and rugby events, raffles and race nights.
A rugby match at Hull Wyke, Bricknell Playing Fields (HU5 4LN) on July 25, kick-off at noon, will be for Life For A Kid. There will also be a boxing fundraiser, a 45-minute non-stop sparring event with Tony Smooth, on May 27 at 6.30pm, at Grays Gym Hull, in Telford Street, and on July 18, about 15 people will join Keiron in a Three Peaks challenge.
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