Wiltshire mum of disabled twins says respite care is vital

Lucy Matthews with two year old Isla-Rae, who is fed through a peg in her stomach as she is unable to swallow safely.

A mum with disabled two-year-old twins says she relies on respite care because each day "can be very difficult and lonely at times."

Isla-Rae and Esmae, the daughters of Lucy Matthews from Melksham in Wiltshire, both have cerebral palsy.

Isla Rae's condition is more severe and she qualifies for help from Julia's House Hospice.

The hospice has launched a fundraiser saying it is operating at a shortfall of more than £1 million a year.

Talking about the respite care, Lucy said: “I find it helps more for me than for Isla, it’s for me to have a break.”

Julia's House provides practical and emotional support for families caring for a child with a life-limiting or life-threatening condition in Wiltshire and Dorset.

It has a centre in Devizes but also does a lot of work in the community in people's homes.

Lucy said it helps having people to talk to who know what they are going through. She said: "There's not many people who understand exactly what life is like for us."

Isla-Rae and Esmae were born suddenly at 27 weeks. Isla-Rae weighed 700g and Esmae weighed 900g. Both needed resuscitating at birth.

'We don't know how long we've got'

Isla-Rae's cerebral palsy is more severe and she also has dystonia, scoliosis of the spine, a dislocated left hip, and is on a lot of medication.

Lucy said: "We don't know how long we've got with her, but she is currently doing well."

Isla-Rae is unable to tolerate much food so is tube-fed every three hours, including throughout the night.

Esmae's disability is less severe and it is hoped with support she may one day be able to walk. She has a standing frame which it is hoped will help strengthen her legs.

Mike Bartlett has appealed for the community to support the fundraising

Deputy chief executive of Julia's HouseMike Bartlett said: "We provide a vital lifeline to families of the most seriously ill children across the whole of the county both at the hospice here and across the community. At the moment we're not raising sufficient funds and there's currently a shortfall of a million pounds a year.

"So we really need the community to get on board and help us protect this amazing service for the future."

The campaign, which hopes to raise £1.5m, will include a lottery and one-off events.