Reuben Suckley seemed like any other two-year-old until his family noticed his walking was unsteady – but by the time he was diagnosed with Krabbe disease, it was already too late to treat
A mum has revealed the frightening early warning signs that something was wrong with her young son – after he was diagnosed with a severely life-limiting and rare condition.
Until earlier this year, little Reuben Suckley appeared just like any other two-year-old – mad about Liverpool football club, animals, and mucking about with his older brothers. But it was something equally typical that proved to be an ominous sign of the devastating diagnosis ahead – with the youngster wobbly on his feet while walking.
It wasn’t until he suffered a seizure in February 2026, when he was rushed to A&E by his panicked mum, Kandace Giordani, 33, that medics realised it was something more severe than delayed development – and a week later, Reuben was diagnosed with leukodystrophy.
The rare, fatal and inherited condition causes swift motor and cognitive decline, attacking different areas of the brain one by one, and has a heartbreakingly low average life expectancy.
The only treatment options available must take place before symptoms emerge – meaning, in Reuben’s case, it was discovered too late. It was the first time many of his doctors had encountered, or dealt with, the disorder.
“It was a horrendous shock and a pain I can’t even explain,” Kandace, from north London, told creatorzine.com. “The consultant that told us the diagnosis had limited knowledge or answers for us because it is so rare.
“It was such heavy news, and we had so many questions, but no one had the answers, so we were really scared. When the people that need to help you don’t know what you’re dealing with, you can’t help but wonder ‘What now?’.”
Reuben’s aunt, Chelsie Osborne, 27, added: “It was surreal, and a feeling of such painful hopelessness.” Additional tests disclosed that Reuben suffers from a type of leukodystrophy known as Krabbe Disease, which typically advances rapidly.
Yet despite the seriousness of the diagnosis, Reuben’s symptoms had been alarmingly subtle in the preceding months. His relatives had observed that the left side of his body seemed marginally weaker, and he would frequently hold food in his mouth without swallowing it.
Above all, they noticed that his walking remained shaky as he developed, and he never appeared sure-footed. While Kandace harboured concerns, medics suggested he was still maturing and recommended she return with him at a later stage, when Reuben reached two years old.
However, when he ceased walking entirely, reverting to crawling, they recognised something was wrong. His family also witnessed him making small jerking movements, which they attributed to balance and stability problems, until one occasion when Kandace realised it resembled a seizure.
She rushed him to hospital, where the NHS promptly conducted examinations, including an MRI, ECG, EEG and blood tests. The MRI revealed signs of white matter deterioration in his brain – a marker of leukodystrophy. Life took a dramatic turn when Reuben received his official diagnosis, and he is now under the close watch of several specialists, including a neurologist and a local team of therapists.
For now, he remains much as he always has been, but his family have been warned by medics that only half of children with Krabbe disease survive to their fifth birthday, and they are likely to witness a steady deterioration in Reuben’s condition.
They’ve already seen a decline in his mobility, and Reuben never fully developed speech. Now, the family are bracing themselves for a decrease in his ability to swallow, see and hear.
Kandace said: “The hardest part is not being able to do anything about it. As a mother, you would do anything to help your child. But with leukodystrophy, there is nothing I can do to take it away from my Reuben.
“There is no medicine, no treatment, and no amount of rest that can change this – and that is my greatest heartbreak. I love my son with all my heart and it pains me beyond words to know I cannot protect him from this or make it better.
“This is a horrific experience that I wouldn’t wish on anyone.” It’s for this reason that his family have chosen to share Reuben’s story, in the hope of raising awareness of the condition so that other families might have a chance before it’s too late to intervene.
Kandace said: “It often starts as a hidden disability, something you don’t immediately see, and when it progresses, it comes as such a devastating shock. From the moment of diagnosis, it feels like you are already grieving.”
Chelsie added: “The helplessness is truly agonising.” The family have been counselled to make Reuben as cosy and joyful as possible, and have been modifying home life to accommodate his requirements.
While his physiotherapist has suggested keeping him active as much as possible to prevent his muscles from becoming more rigid, the family finds it challenging to provide him a secure environment in which to wander freely.
To assist, Chelsie, Reuben’s aunt, is presently raising funds for a crucial home soft play, as well as additional money for any extra therapies not covered by the NHS – with a target of £50,000.
With intentions to construct a small garden house with cushioned walls and flooring, a ball pit and some basic soft play toys, they aspire to offer Reuben a safe environment to enjoy play just like any other child can.
Chelsie said: “Reuben just wants to be free and play like any other two-year-old, and it’s not fair that he can’t do that safely. He lights up when he sees a soft play, but we can’t safely give him that freedom at the busy local ones, which aren’t really accessible for him.
“Soft plays often have climbing structures that he cannot access, and are filled with older kids and lots of noise that triggers his seizures. So to be able to give him one at home would help keep him moving and happy.”
Despite everything he endures, Reuben continues to bring his family enormous happiness – and never loses his smile.
Kandace added: “Although this is so horrendous, painful and heartbreaking, Reuben remains his bubbly self. He loves animals and Liverpool football club – as soon as it comes on the television or the song plays, he’s ecstatic and bouncing.
“He is just the happiest little boy. Since he started smiling as a baby, every single day, he has a smile for us. He’s bright and grasps a lot – although we have been told he most likely won’t speak, we are teaching him Makaton, a form of sign language, to help him communicate.
“He’ll sign ‘more’ when he wants more food or more tickles, and even signs ‘thank you’ and ‘please’. We are helping teach him as much as we can, as quickly as we can, because we know time isn’t on our side.”
Chelsie added: “Our goal is just to do everything we can for him to live life as happily and safely as he can – to the fullest. We will do everything in our power to make sure he continues to be the happy little boy he is and lives his life as fully and joyfully as possible – because he deserves nothing less than the very best.”
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