A little girl who is “trapped in her own body” is getting comfort from the colours of two bubble machines - thanks to people’s generosity.
Honey Gloster’s rare condition, Ohtahara Syndrome, was featured in the Mercury earlier this year when her mum Hannah appealed for help to buy a Mixed Light Sensory Pack to help the three-year-old relax when she is distressed.
Within weeks the Deeping Men’s Group donated the full £1,320 needed and the charity Caudwell Children, through whom the appeal was made, also raised enough cash.
Now the sensory pack and a mobile sensory kit which can be moved from room are helping to soothe little Honey when she has an epileptic seizure or is in distress.
Hannah said: “She cannot move or lift her arms. She is trapped in her own body. So we are never sure what she can see or hear.
“But when we close the blinds in her bedroom and switch on the sensory pack she seems to really like it.
“The pack has a big bubble tube and when it turns blue and green you can see her eyes light up. It is fantastic to see that.”
Ohtahara Syndrome is a rare form of childhood epilepsy that also affected Prime Minister David Cameron’s son Ivan, who died at the age of six. It leaves a child very floppy, often results in regular chest infections and severely restricts development.
Honey needs 24-hour care. Her life rotates between hospital visits, physiotherapy sessions and treatments.
The family, of Lime Tree Avenue, Market Deeping, including dad Darren, sister Hope, seven, and brother Kodi, two, work together to do their best for Honey, Hannah said.
When Honey has seizures or struggles to breathe even her seven-year-old older sister Hope, has to be “a little carer” at times, helping her to use a suction machine to ease her distress.
Hannah said: “The sensory pack helps all of us to get involved. It’s something that the family can do together.
“We are really grateful to both the Deepings Men’s Group and Caudwell Children’s charity.”
Experts had set Honey’s life expectancy at two years.
“But she’s is doing so well,” Hannah said.
“We know we have limited time and take each day as it comes.
“We do as much as we can with her and include her in our family activities.
“We know we are going to outlive her so we’ve just got to do the best we can for her.
“Hope does a lot with her, she’s a little carer herself. And Kodi has just grown up with it and is very gentle with her.
“She is such a lovely little thing. If you look at her little face it melts your heart.”
Brian Thornthwaite is chairman of the Deepings Men’s Group, a charity that helps people in the area who need mobility aids.
He said: “When we read Honey’s story in the Mercury we were very moved and wanted to help.
“I have since been to see her and have said that if she needs anything in the future we will be only too pleased to help.”
Caudwell Children provides help with equipment and therapies for disabled children and their families across UK.