A plea has been made to protect funding for respite breaks for families with disabled or poorly children.
The Forget Me Not Children’s Hospice team and supporters are among those calling for ring-fenced funding to be allocated to local councils to fund short breaks.
The breaks offer vital respite and support families caring for a child with a life-limiting or terminal illness.
Among those to benefit is Dawn Thompson, whose daughter Lucy, aged eight, was starved of oxygen during her birth.
The Thompson family are helped by the Brackenhall-based hospice.
Dawn said: “Within minutes of being born Lucy was whisked away from me and rushed to the Neonatal Intensive Care Unit.
“She was not breathing and for the next three hours I had to endure the heartache of not knowing if she had even survived.
“Lucy had been starved of oxygen during delivery and the consequences of this were to have an enormous impact on her life. As a result she has quadriplegic Cerebral Palsy, which is a condition that affects the muscles and leaves her dependent on a wheelchair.
“In addition Lucy suffers from epilepsy, visual impairment and global developmental delay.
“I am her full time carer and, in return, she is my inspiration. In her eight short years she has brought joy and understanding into so many people’s lives, much more than I alone could ever achieve in my entire life time.”
Dawn said that Lucy requires extra care and feels that her older brother Joshua is sidelined.
“He has missed out on many of the everyday things that most other children take for granted,” said Dawn.
“I know it has been very difficult for him but despite everything he has never complained. He is an amazing big brother who has also taken on his role as young carer admirably.
“One of the many wonderful things about Forget Me Not Children’s Hospice is that they recognise the need to support the whole family. Their Sibling Groups is especially important for brothers and sisters just like Joshua.
“Forget Me Not Children’s Hospice has helped us as a family in so many ways. The Hospice At Home Service has enabled me to have a break from my caring responsibilities.
“The hospice has taken the time to get to know Lucy and all of her little ways, this in turn has given me the confidence to hand over the reins and have some valuable time off. I can re-charge my batteries, get on with other household tasks and more importantly spend some quality time with Joshua.
“The overnight stays at Forget Me Not Children’s Hospice are our light at the end of the tunnel.”
The hospice is among those calling for nationwide support for short breaks, with half of the UK’s 53 children’s hospices in England receiving no funding from local authorities;
In Kirklees approved budgets show a review of the £584,000 the council spends on bespoke short break and respite services. The money funds 60 places for 38 weeks a year plus support in the school holidays. A review is yet to take place.
