Parents of gravely ill child refused respite care

The parents of a two-year-old child with a life-limiting illness have told of their "exhaustion" after being refused a request for respite help.

Two-year-old Tilly has Dravet Syndrome, a rare genetic epilepsy which causes seizures that could kill her. Their request to Birmingham Children's Trust for respite was refused with the trust suggesting training grandparents to help, even though the family had told them that was not possible.

Her father, Dan, said they had asked for a few hours of respite per week as Tilly needs 24 hour monitoring and had "cried and begged for help."

The trust says it is now reviewing the multi-agency decision.

Dan told the BBC the monitoring and caring for a severely disabled child meant neither he or his partner got much sleep, were exhausted and also had two other children to care for.

"It is really really hard," he said.

He said the family had "cried and begged for help in meetings at home."

"I mean, does our family unit have to break down, does it have to get to a point where we can no longer sustain this and then they'll step in and give you support because right now that's where we're at.

"We don't have any alternatives. If grandparents were an option, we'd already be doing it."

Tilly underwent gene therapy at Sheffield Children's Hospital in 2024 to try to help reduce seizures connected to her condition. It was part of a clinical trial.

Her parents believe the therapy has helped reduce the severity of frequent seizures which led to many ambulance trips to A&E.

But she still has them, as well as autism and learning difficulties.

Her mother Jenny said: "I'd say in Tilly's life at least about ten times I've honestly thought that she's gone, she's died, with the seizures and going onto ITU and them all saying that we can't stop it and the panic."

The family praised A&E staff at Birmingham Children's Hospital for saving Tilly's life numerous times.

Birmingham Children's Trust is the body responsible for providing social care and support services for children, young people, and families in Birmingham.

A letter from the trust, shared by the family, said its panel had considered Tilly's needs but did not believe there were any unmet needs and that a child of Tilly's age needed to be with her primary care givers to ensure good attachment.

"Panel recommend grandparents are brought fully on board with training around this to support the family as a whole to manage this," it said.

The trust had known grandparents were unable to help as they had told staff during assessments, Dan said.

"So two of our grandparents are unfortunately no longer present, one works full time and the other one has her own health concerns," he added.

A spokesperson for Birmingham Children's Trust said following a request from the family it was currently reviewing the multi-agency decision made about support for Tilly.

Meanwhile Birmingham Community Healthcare NHS Foundation Trust said: "We continue to provide a package of support for Tilly, including occupational therapy, physiotherapy and speech and language therapy, and remain in regular communication with her parents about her care."

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