How I told my life story through Lego obsession NEW KID ON THE BLOCKS
Boy with rare spine condition creates hospital room on TV
the specialist baby care unit in Leeds where he spent much of his childhood.
It features a caterpillar on the wall, a memory from their time in the hospital, and a small Lego character with a burned hand, modelled on Jack.
NIGHTMARE
The disorder caused both the boys’ spines to stop growing as children, while their limbs continued to develop. There is no cure.
Paul, 48, says: “As our children grew, we got used to using wheelchairs – but their friends fell by their wayside. They didn’t get invited to other kids’ houses because no one had wheelchair access. Lego has been a constant throughout Lewis’s life. In the show it was an opportunity to reflect on our life. A kind of welcome to our world.”
Paul, a British Legion handyman, and wife Julie first realised something was badly wrong with Jack when he was diagnosed with a “hip click” – a popping sound in his joint – at six weeks old.
It was three years before they were given a diagnosis.
“It was a nightmare,” says Paul. “We were even investigated for child neglect because Jack hadn’t put on any weight.” When Jack was three, Julie fell pregnant
But Lewis aims to work for Lego Pictures: JOHN GLADWIN
with Lewis and the family faced the agonising wait to find out if he also suffered from Morquio syndrome. They were initially told he was a carrier but didn’t have the disease – then he developed the same symptoms as his brother. “The only family we could find with two children with the syndrome at that time was in Canada – that’s how rare it was,” says Paul. “Our world fell apart. I have no idea what age they will live to. The oldest person is in her mid-40s at the moment.” But the devastating diagnosis has not held Lewis back – and he hopes one day to work for Lego. “That would be his dream,” said Paul. Lego Masters returns to Channel 4 on Tuesday at 8pm
As our kids grew, their friends fell by the wayside. Lego has been a constant in Lewis’s life DAD PAUL ON HEARTBREAK OF HIS CHILDREN’S ILLNESS
antonia.paget @sundaymirror.co.uk