A dad from Witham St Hughs has shared the emotional journey of raising his son Arthur, who is living with a rare genetic disorder, ahead of his fourth birthday. Born ten weeks premature in June 2021, Arthur has faced challenge after challenge since the moment he arrived.
Arthur was diagnosed early on with Kleefstra Syndrome, a rare genetic condition that affects multiple parts of the body, including the brain, heart, kidneys, and more. He’s also living with chronic lung disease, is partially sighted, and has significant hearing loss, reported Lincolnshire Live.
His dad, David Parsons, 38, remembers the moment things began to unfold. “He had lung disease from the start, so he was on a ventilator for the first five or six months and was in hospital,” he said. Arthur was just weeks old when the diagnosis came in. And while David praises the NHS for their help, he admits it was clear how little awareness there was around the condition.
“Arthur’s strength came through—the strongest person you could ever meet,” he said. “He finally pulled through and came home.”
Now almost four, Arthur’s mobility is still extremely limited. He can’t crawl or sit for long, but despite it all, he’s a happy little boy who lights up around his family. “He loves being supported on his legs or his hands but just can’t muster the strength to move and co-ordinate his limbs,” said David. “But he has it in him.”
Arthur responds best to high-pitched noises and bright lights and loves being outside or going for a drive. Determined to help his son gain strength and improve his mobility, David took on the 2025 London Marathon to raise funds for intensive hydrotherapy sessions—therapy that could be life-changing for Arthur.
David completed the race in five hours and 52 minutes, raising £1,600 so far. “He cannot yet crawl or walk, no matter how much he tries or wants to. But hydrotherapy might give him the best chance,” he said.
He believes the therapy will not only help Arthur build strength and improve his balance but might also offer vital insight into how to support others living with the same rare condition.
Now, with a bit of support and a lot of love, David hopes Arthur will one day get the chance to stand tall on his own. “He fought so hard to live—he deserves every chance to live that life to the absolute fullest.”
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