Parents Of Gravely Ill Child Refused Respite Care

The parents of a two-year-old kid pinch a life-limiting unwellness person told of their "exhaustion" aft being refused a petition for respite help.

Two-year-old Tilly has Dravet Syndrome, a uncommon familial epilepsy which causes seizures that could termination her. Their petition to Birmingham Children's Trust for respite was refused pinch nan spot suggesting training grandparents to help, moreover though nan family had told them that was not possible.

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

The spot says it is now reviewing nan multi-agency decision.

Dan told nan BBC nan monitoring and caring for a severely abnormal kid meant neither he aliases his partner sewage overmuch sleep, were exhausted and besides had 2 different children to attraction for.

"It is really really hard," he said.

He said nan family had "cried and begged for thief successful meetings astatine home."

"I mean, does our family portion person to break down, does it person to get to a constituent wherever we tin nary longer prolong this and past they'll measurement successful and springiness you support because correct now that's wherever we're at.

"We don't person immoderate alternatives. If grandparents were an option, we'd already beryllium doing it."

Tilly underwent cistron therapy astatine Sheffield Children's Hospital successful 2024 to effort to thief trim seizures connected to her condition. It was portion of a objective trial.

Her parents judge nan therapy has helped trim nan severity of predominant seizures which led to galore ambulance trips to A&E.

But she still has them, arsenic good arsenic autism and learning difficulties.

Her mother Jenny said: "I'd opportunity successful Tilly's life astatine slightest astir 10 times I've honestly thought that she's gone, she's died, pinch nan seizures and going onto ITU and them each saying that we can't extremity it and nan panic."

The family praised A&E unit astatine Birmingham Children's Hospital for redeeming Tilly's life galore times.

Birmingham Children's Trust is nan assemblage responsible for providing societal attraction and support services for children, young people, and families successful Birmingham.

A missive from nan trust, shared by nan family, said its sheet had considered Tilly's needs but did not judge location were immoderate unmet needs and that a kid of Tilly's property needed to beryllium pinch her superior attraction givers to guarantee bully attachment.

"Panel urge grandparents are brought afloat connected committee pinch training astir this to support nan family arsenic a full to negociate this," it said.

The spot had known grandparents were incapable to thief arsenic they had told unit during assessments, Dan said.

"So 2 of our grandparents are unluckily nary longer present, 1 useful afloat clip and nan different 1 has her ain wellness concerns," he added.

A spokesperson for Birmingham Children's Trust said pursuing a petition from nan family it was presently reviewing nan multi-agency determination made astir support for Tilly.

Meanwhile Birmingham Community Healthcare NHS Foundation Trust said: "We proceed to supply a package of support for Tilly, including occupational therapy, physiotherapy and reside and connection therapy, and stay successful regular connection pinch her parents astir her care."