Sheffield family desperate for council house before son, 4, turns blind from rare life-limiting disease

A family-of-four from Sheffield is desperate to be moved into a council property after their youngest son, aged four, was diagnosed with Batten disease, a very rare and life-limiting disease.

Batten disease first causes seizures, which the family say saw their child diagnosed ‘really quickly’, around 12 months ago. Sadly, the disease then causes a gradual decline in a child's ability to walk, speak and see, alongside progressive dementia.

This means the family will need an adapted property, or one that can be adapted for wheelchair accessibility, which may include a lift, a walk-in bathroom, and space for hoists, where they can live for years to come.

The family, who currently live in a privately rented home in Handsworth, have been on Band A priority for around seven months, which means they are in 'critical' need of a home. But each time a property has become available, they have been told it has either been ‘too big’ or ‘too small’ for them.

The dad, aged 30, who would like to remain anonymous, said: “We’re really frustrated. We want to move before our son goes blind. That way when his eyesight goes eventually, at least he will have some understanding about where he is. It could be a month, or it could be 12 months, we just don’t know.

“It feels like every time we speak to the council it’s always more bad news - we can’t have this or we can’t do that. We just need some support."

After waiting for several months without good news, the family contacted MP Clive Betts about their plight, who has raised it with the council.

The only preference the family has made is that their new home remains within the catchment area of their two sons’ current school and close to their extended family in Manor.

However the home that has recently been suggested to the family by a Sheffield Council occupational therapist, is an upside down house in Gleadless. This would leave one of the parents upstairs for much of the day with their young son due to his frequent seizures, and without easy access to a garden.

Dad said: “I would rather build a house brick by brick than be put somewhere we don’t want to live. The council just doesn't understand.”

Councillor Douglas Johnson, Chair of Sheffield Council’s Housing Policy Committee, said: “Officers are working with an occupational therapist to ensure the family can find a home that’s suitable for their son as far as possible. We will look at a range of housing options that suit the family’s requirements and any home will be checked to ensure it meets (their) needs before it is offered to the family.

“Sheffield has a real shortage of affordable homes and this is placing significant pressure on the council to be able to identify suitable homes. Housing officers workclosely with families with a housing priority award but this can take some time, depending on the type of home is required.”