Mum unable to afford home adaptations bids to buy church for son with muscular dystrophy

A mother says she has been forced to consider buying a disused church for her disabled three-year-old son because grant funding will not cover adaptations to their home.

Rachel Devereux, who lives in Kirklees, says fundraising for the church is the family's only option as the grant available from the local authority to modify homes has not increased in 16 years.

Her son, Hero, was diagnosed with Duchenne muscular dystrophy (DMD) as a toddler. The condition has no cure and means muscles become weaker until patients need help to breathe. People with DMD usually live into their teens.

Rachel, 39, a former nurse, said: "In our hope to adapt our home we have found that the grant from local councils to support that adaptation hasn’t changed in over 16 years – it's £30,000.

"To get our home right will cost over £50,000... We just can't afford it.

"We have seen a local church for sale, which we are now considering buying. It would be flat and more suitable for Hero."

Hero was diagnosed with Duchenne Muscular Dystrophy as a toddler. Credit: Rachel Devereux

Rachel said Hero's diagnosis came as a "massive blow".

"Your life plans and your imagination of what life will be like changes in an instant," she said.

"[But} instead of seeing it as a death sentence, we are seeing it as a life sentence, and we want to give him the best life he possibly can have."

Rachel, who has three other children, said the council had advised the family to move or accept a council house, but local four-bedroom homes were too small for wheelchair and hoist access.

She wants to see more wheelchair-friendly housing built, but in the meantime has started an online campaign to raise awareness and funds for Hero's future.

She runs a support group for other parents and hopes to be able to run sessions at the church if the bid is successful.

"I see the mortgage as our responsibility, but we would like to fundraise for the adaptations because it is also going to help the community," she said.

The family say they are trying to provide 'the best life' for Hero Credit: Rachel Devereux

Grants for home adaptations are handed out by the local authority, but are funded by the government.

Kirklees Council said it was aware the maximum grant had not changed since 2008.

Cllr Moses Crook said: "As a local authority, we receive a portion of the Department for Levelling Up, Housing and Communities' Disabled Facilities Grant, aimed at supporting residents with disabilities in adapting their homes for independent living.

“We recognise the frustrations that come with these limitations. Although the council is guided by the government-set maximum grant, dependent on individual circumstances, there are discretionary funding options that we are committed to helping residents explore.

''We strongly encourage any residents with concerns to get in touch. Our team is ready to provide guidance on the available options and support services, ensuring every resident has the opportunity to live independently.”A government spokesperson said: “The government is committed to helping older and disabled people to live independently and safely in their home.

"We have provided a total of £3.94 million funding to Kirklees Council in the financial year 2023-24 for home adaptations for their local residents.

"Councils have flexibility to provide grants above the £30,000 limit in line with a locally agreed and published Housing Assistance Policy.”

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