Politics

Mum of son on ventilator fears having to wait until Christmas for suitable home

A New Malden mum fears having to wait until Christmas for a new home suitable for her severely disabled son, who has a life-limiting muscular condition (SMA).

Kelly Harrison, 38, posted a viral video on social media in November last year highlighting the difficulties she faces getting her son into and out of their first floor home, which is up a flight of stairs.

In the video she shows viewers how long it takes to carry Vinnie, 6, and his equipment up the stairs.

Vinnie is now around 110cm and weighs 18kg, putting pressure on Kelly’s back.

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“Because Vinnie is ventilated and doesn’t have a safe swallow, he can’t really be left for a considerable amount of time by himself because obviously it’s unsafe to do so,” she tells viewers.

Days after she started her campaign, Kingston Council made contact with her regarding an empty property down the road that could be adapted for her son’s needs.

It needs a single-storey extension downstairs to house Vinnie, his adapted bathroom, and the nurse’s area.

Although Kelly has finally made some progress, she is frustrated by how long everything is taking, with the plans still at the pre-planning stage before they can apply for planning permission.

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“No-one seems to be pulling their finger out,” she told the Local Democracy Reporting Service.

“They are going on about how it’s such a life-threatening situation that I live in, which obviously it is, because if I fall, we’re buggered, but it’s like no-one seems to be pulling their finger out and making it go quicker.

“The house is just sitting there empty. And we can’t move in until the adaptations are done because obviously it’s not suitable. So we will have to wait for the work to be done.

“We were anticipating maybe being in by the end of the summer. But I think now realistically we’re looking more towards Christmas. But obviously you’d think with the urgency they’d be fast-tracking everything, but no one seems to be doing anything about it.

“It’s stressful because it’s constantly chasing as well.”

Kelly is also raising some extra money so she can pay for more storage space and an adapted kitchen island so Vinnie can eat with the family in the kitchen.

A spokesperson for Kingston Council said: “Ms Harrison has been kept informed weekly following enquiries from her, that the pre planning application has been submitted and that colleagues in the housing department are awaiting a response to the application.

“A letter received in acknowledgement of the submitted application was shared with her as recently as yesterday. We should have a response from the planning department by next week.

“We must advise that the property has not been offered to her as yet and cannot be offered to her before confirmation that the extensive adaptations required to make it suitable for her needs will receive the required planning permission. “

Vinnie on his sixth birthday earlier this year
Vinnie on his sixth birthday earlier this year

Vinnie was diagnosed with spinal muscular atrophy Type 1 at nine weeks old after Kelly worried he was floppy with no head control.

His condition means his muscles progressively weaken. He will lose the ability to swallow and eventually to breathe on his own.

However, Vinnie was able to start a clinical trial in 2015 for a new drug called Spinraza.

It was originally just meant to halt the progress of the condition, but has been found to help people regain the strength lost.

Kelly says the drug has done “amazing” things for Vinnie.

“He shouldn’t even be here,” she said

You can donate to Vinnie’s crowdfunding page here

If you have a story for us from this part of London, please email [email protected]



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