Mum has to carry five year old disabled son up and down treacherous stairs in ‘wholly unsuitable’ house

3 mins read

Friday 8 October 2021

Tags: counting the costs, housing

Leo, aged five, has the rare genetic condition KPTN (Kaptin, Actin Binding Protein) Syndrome, of which there are only 17 known cases worldwide. He is a wheelchair user, has severe epilepsy and global developmental delay.

Leo lives with his mum, Emma and brother Jo, in a private rented house in Liverpool.

Emma’s biggest fear is falling down the stairs with Leo. Leo sleeps in the dining room downstairs as it’s the only room that will fit his medical bed. There is no bathroom downstairs so Emma has to carry him up and down a curved and narrow staircase to the upstairs bathroom.


She said: “The Occupational Therapist has said very clearly our house isn’t safe for our needs and that the stairs are perilous. I’ve got Carpal Tunnel Syndrome from the lifting. We are waiting for a council house and are in Band B for medical need. But despite all this we’ve been on the housing list for 3 years and not been offered a single option. There are so many people looking, it feels hopeless.”

Due to his condition, Leo is often sick, so not only does Emma have to carry him upstairs to use the bathroom and toilet, also when he is unwell.

Every day she checks where she is on the housing list for a council house and is nowhere near the top. She has been warned she could be waiting ten years to find somewhere.

Emma has spoken to the Daily Mirror today (Friday 8 October) to highlight the desperate housing situation of many families with disabled children up and down the country.

Disabled children need greater priority for social housing

She’s supporting Contact’s #Counting the Costs campaign calling for decent homes for disabled children and their families. This follows the release of our housing survey which found that many families with disabled children live in unsuitable, crowded or unsafe homes.

Amanda Batten, Chief Executive of Contact, said: “Poor, overcrowded and unsuitable housing has a huge detrimental impact on the physical and mental health of families with disabled children and this urgently needs to be addressed. The biggest issue is the shortage of accessible social and affordable housing for families with disabled children. Greater priority must be given to disabled children and their families who need social housing.”

Take action by joining our #CountingTheCosts campaign. Together, we can make a change.

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