Darlington couple take on council over impact of cuts on their disabled daughter

Darlington couple Laura and Simon Hayden have battled for their daughter since a seizure as a new-born left her severely disabled.

In their fight to ensure Mila has the life she deserves, the pair are now taking on Darlington Borough Council over proposals to save money by cutting vital services for disabled children.

“WHEN we came out of hospital after spending four months at the Royal Victoria Infirmary, we were completely and utterly traumatised.

“You think you are having a healthy baby and you make so many plans for that baby and then the world as you know it is completely different.”

As Mrs Hayden talks, her husband suctions their tiny daughter’s airways, a task that must be performed repeatedly throughout the day.

With disabilities including cerebral palsy and epilepsy, everyday life is often gruelling and always difficult for 22-month-old Mila and her devoted parents.

Mila cannot swallow and is fed through a ‘Mic-key’ button in her stomach – any cough could be life-threatening.

She is monitored constantly by her parents and can see up to 20 experts a week in a life dominated by her medical needs.

22-month-old severely disabled Mila Hayden dozing on her dad Simon's chest. Her parents say they will be hit hard by the cuts to early care in Darlington. Picture: STUART BOULTON

Mrs Hayden gave up her job to have her first child and is now completely devoted to her care, while her father, a soldier, phones home many times every day to check on Mila’s wellbeing.

For the little girl’s parents, it is a life clouded in worry, depression, exhaustion and isolation – a far cry from the hopes they harboured for parenthood.

A silver lining comes in the form of regular visits from Paula, a worker with Darlington’s Early Support Service (ESS).

ESS is a home-based support programme for families of under-threes who have severe and complex disabilities.

The service has been earmarked for closure by Darlington Borough Council as part of a programme of swingeing budget cuts.

The proposal was made despite an assessment finding a lack of support for families like the Haydens could lead to a considerable future cost for the local authority.

Without Paula and her colleagues, life for the Haydens would be unrelentingly bleak and rife with confusion.

Paula – and the ESS – has given the Haydens precious moments of respite, trips to meet other families, help with bureaucracy, sensory equipment and, most importantly, friendship and support.

“In hospital, we were surrounded by people doing everything for Mila – when we came home, we were completely alone,” says Mrs Hayden.

“We have no friends and family in Darlington and hadn’t been out together since she was born.

“When we met Paula, I felt like Mila’s life didn’t have to just be medical – she’s given us a little bit of normality, she’s our right-hand man.

“Paula’s so intuitive, sometimes all she has to do is take me for coffee and cake and that fixes everything for a while.

“We are fighting for ESS because they are the only thing that has kept us going.

“When I found out they could close, I cried – I’ll do anything I can to stop this happening.”

Mr Hayden added: “We can’t bear the thought of any other family going through what we have without this kind of support.

“They are helping so many families in this town and if they’re not there, who will be?”

A Darlington Borough Council spokesman said: “We are mindful of the concerns raised by Mila’s family. Nothing has been decided yet, because the proposals are subject to ongoing consultation and we are working with a range of stakeholders, including families, to assess the likely impact.

“We are keen to listen to the views of the family and others who feel they may be affected by these proposed changes.

“A senior member of the children’s services team would be pleased to meet with Mila’s family to discuss the concerns around the proposals, if the family feels this would help.”