An Ilkeston dad has launched a fundraising campaign to buy a state-of-the-art travel bed for his son, who has a rare genetic disorder.
Jude Grainger is one of only 600 people suffering from Smith-Magenis syndrome in the world, a condition caused by a chromosome disorder.
The five-year-old was diagnosed with the rare condition at 18 months old and is a regular visitor to Great Ormond Street Hospital in London,
His dad, Dez Grainger, has now set a fundraising goal of £1,400 for a new Safespaces travel bed for Jude.
“He’s too big for his travel cot now and I’m worried he might just roll out of bed and hurt himself,” Dez said.
“He needs this special bed to keep him safe.”
Safespaces supply custom-made safe rooms and sleep areas designed for adults and children who may be unsafe in an ordinary room or bed.
Smith-Magenis syndrome (SMS) causes behavioural problems, with some sufferers also struggling with speech and mobility.
Due to his illness, Jude hasn’t been able to attend Larklands Infant and Nursery School, Ilkeston for a year.
But the school has helped to raise money for his new bed by hosting a non-uniform day on July 18.
Half of the money raised will go towards the bed and half towards the Smith-Magenis Foundation.
“They said they wanted to do something for Jude because he’s been out of school for so long,” said Dez.
“It’s brilliant and very much appreciated.”
Dez and wife Laurie, who have six other children, have raised around £730 so far for Jude’s new bed and much more for the Foundation.
Dez added: “There are just so many people I want to thank.”