A devoted mum has shared the heartwarming moment her disabled son was finally able to explore his newly adapted home.
After years of planning, months of building work, and a setback that saw three-year-old Harry hospitalised just days before the big move, he finally got to see all the hard work his family had done.
Katie Hughes, from New Milton, Hampshire, UK, spent three years planning and five gruelling months overseeing renovations to adapt the family’s home for her son, who lives with spinal muscular atrophy type one, a rare and life-limiting neuromuscular condition.
Harry received life-saving treatment, the ground-breaking gene therapy Zolgensma, at just six months old.
While the treatment saved his life, a delayed diagnosis meant he still experiences significant disabilities and requires round-the-clock care.
He is unable to walk and relies on equipment to move around.
Katie said: “We spent three years of plans and five months of build to renovate and adapt our current home for our son Harry.
“We’re a one-income family due to his care needs, so we couldn’t afford to move homes and our house wasn’t suitable.”
Katie told how thanks to help from the council, generous donations raised through fundraising, and the family’s own savings and equity, she and her family managed to raise enough money to completely adapt the ground floor of their existing home, including a new accessible bedroom and bathroom for Harry.
However, disaster struck just as the family were preparing to move back in, with Harry getting sick again the week the house was ready.
Despite the chaos, and with unpacked boxes and clutter still everywhere, the emotional payoff was worth every sleepless night.
Now, Harry can move freely around the entire ground floor of his own home, and even venture outdoors, something that, until recently, was impossible.
The journey is far from over for the Hughes family, but they’ve finally taken a massive step forward in giving Harry the independence and dignity he deserves.
Katie said: “Unfortunately, Harry became very unwell the week we were due to move home and had to be admitted to HDU for 10 days with a virus and two infections.
“We worked really hard to get the house ready for him to come straight home and see it.
“Seeing him being able to access the whole ground floor was so special. It changed our whole world to see him be so happy and access areas he hasn’t been able to before.”
She added: “It finally happened after a lot of hard work and stress, but we got there, even if it wasn’t perfect and there’s still a lot to do, it was a perfect moment for us.
“Honestly, seeing his reactions and watching him drive freely around the ground floor made it all so special.
“It didn’t matter that there were boxes still unpacked or that there was clutter everywhere. We were home, and that was the main thing.
“When he realised, he could now drive into the garden – that was my favourite part.”