'Home adaptations for my disabled son cost so much'

The mother of a seven-year-old boy with a life-limiting condition that will result in serious disabilities has spoken about the high cost of adapting their home for his needs.

Kairo has Duchenne Muscular Dystrophy, meaning he will lose the ability to walk and his strength and mobility will deteriorate each year.

Tarnia Richardson, 42, said that as he gets older, Kairo would struggle to use stairs, narrow spaces and a standard bathroom, meaning his daily care could become "difficult and unsafe".

She has received a grant from Sheffield City Council to help make her house more accessible, but said she would need to fundraise to pay for the entirety of the work needed.

Tarnia said: "At the age of two he couldn't really jump and he was much slower than other kids at the soft play area. We thought it might be dyspraxia. We really didn't want it to be Duchenne.

"We know there's no cure but things have changed in terms of treatment, although it's life-limiting people are living until their 20s and 30s now.

"We just want to make sure Kairo has a safe home and that he can lead a happy life."

Kairo can still walk unaided for short periods before needing to use his wheelchair, and can climb the stairs while holding onto the wall.

"We know he'll decline between the ages of eight and 12 and need a powered wheelchair. He won't be able to brush his teeth or give us a hug at some point too.

"We know heart failure and respiratory problems will come later too."

The council awarded the family the maximum amount of £30,000 available under its disabled facilities grant scheme so that they can extend their property.

Tarnia said: "It sounds like an awful lot of money and it really is but when you talk about building costs - it's nothing.

"It might cover the shell but not plastering and fittings and electrics."

Councillor Angela Argenzio, chair of the adult health and social care policy committee at Sheffield City Council, said the grant was intended to help Kairo get "vital support".

"We hope that this will help the family towards their aim of providing the best possible support for their child," she said.

"We also understand that adapting a home is a significant and personal undertaking, and we remain committed to supporting them throughout this process."

Katie Combes is the director of policy for the charity Duchenne UK. She said many families find themselves in the same position as Kairo's parents.

"Houses do need to be adapted to help Duchenne patients. There is limited support from local councils so families are left to come up with a plan to not just adapt the house but also their lives.

"On average patients lose their ability to walk at 12. Families know it's coming but can get caught out which can be so difficult if a home is not fit for purpose for a child that is suddenly unable to move freely. Thinking ahead is crucial"

She added: "Families face needing expensive equipment like power wheelchairs and as their child gets progressively more disabled so their needs change.

"They also deserve to be able to get on and make memories with their child whilst they can. There is so much for them to think about that everything should be done to support them to give their child the best experience possible."

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