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Family of boy with dwarfism, 4, plead for cash to build much-needed extension

todayFebruary 24, 2022 1

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The family of a four-year-old boy who has a rare form of dwarfism have set up a fundraiser for a home extension to aid his mobility.

Tommy Hibbert from Sutton-in-Ashfield has a rare form of dwarfism called SEDc, and when he was born he was not breathing for 16 minutes and spent seven months on three intensive care wards.

The toddler is having to sleep in the living room because he needs a specialist hospital bed and breathing machinery including a ventilator, oxygen, humidifier and a large number of medical supplies.

READ MORE: Get the latest Sutton-in-Ashfield stories from Nottinghamshire Live

In March 2018 the family applied to Ashfield District Council for an extension, plus home adaptions, and they are currently awaiting approval.

Unfortunately, the council is expecting the costs of the work to be more than the maximum amount allowed, which is why the family are trying to raise extra cash.

Tracy Hibbert, a full-time carer for Tommy, says her family are desperate for the extension.

She said: “He needs the downstairs bedroom and wet room, and we need even more room for Tommy, because trying to sleep in the living room doesn’t work.

“Being honest, even the hardest times aren’t that hard in comparison to how close he was to death at birth.

“The extension will help give him more space to use walking aids and widen all doors for wheelchair and walker access.

“It will help with his own personal independence with having his own bathroom made accessible for him at a lower level.”

Tommy was diagnosed with a brain injury called HIE from lack of oxygen at birth, and he requires a fully trained adult with him 24/7.

He has also undergone two cleft palate operations and is unable to get upstairs in his home.

The family live in a three-bedroom council house but they have four children and not enough room to cope.

She added: “It’s been challenging at times but I wouldn’t change him for anything.

“He is very happy, never known to cry and his speech has really come along.

“He’s been through a lot and it’s been a very frustrating situation getting everything in the living room.

“His siblings help out – they’re really good. We all help in the house and I wouldn’t have it any other way.”

Dad Jason Hibbert, 40, said: “Getting the extension would mean everything to us, with all the equipment we are literally running out of space in the house. We need it.

“It would make it a lot easier as it’s affecting his mobility now a bit with the lack of space.

“We’re in a mess, we’ve always been tidy but now we’ve got more equipment.

“We just do it and get on with it.

“He’s a very happy cute little boy – he runs the show.”

The family started a GoFundMe page when they found out it would cost them around £10,000 for the works to be done on their home. The council, if final approval is given, will stump up the remaining £50,000.

With their crowd-funding pot currently at just over £450, Mrs Hibbert is concerned that time is ticking.

She said: “It’s all up in the air, it didn’t take off as we expected and it’s getting a bit worrying now.

“It’s a bit more daunting now that it’s getting closer.

“The money will only be used for Tommy and to get more space.”

The family also has a Facebook page called “Rock on Tommy” that has garnered nearly 3,000 likes.

Councillor Tom Hollis, cabinet member for council and social housing, said the council was working with Mrs Hibbert to meet her son’s long-term needs.

He said: “We completely understand her frustration.

“However, the work required to create the extension is both extensive and complicated as the property is a mid-terrace with no direct access to the back of the property.

“We are working with several agencies to sort this extension for the family and work is being progressed as quickly as possible.

“We will continue to work with Mrs Hibbert and update her with the progress of the works required. We want Tommy, and all families, to have suitable, safe and comfortable homes in Ashfield and we will do everything we can to achieve this.”

You can donate cash towards the cost of Tommy’s extension here.

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