Charity fills specalist gap

Laila Milly

Laila Milly

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AN INSPIRATIONAL couple from Ackworth hope to fill a “gap in the market” for specialist nurseries providing respite care for disabled children under five.

Steve and Maya McCormack, of Hayfield Way, came up with the idea for the nursery after caring for their disabled daughter Laila Milly, who was born with rare genetic disorder Aicardi Syndrome.

The couple launched the Laila Milly Foundation in memory of little Laila who died a day before her first birthday in March this year.

Mrs McCormack, 29, said: “The kind of service we want to provide is mostly like a support network – somewhere else you can go which is not home or the hospital – a different environment where parents will feel comfortable and not feel like they have to explain all the paraphanalia they have to carry around with their child.

“For the first five months of Laila’s life it was nurses and doctors we made friends with and they were fantastic but just being around other parents is the support that we missed.

“There’s a definite gap in the market for this sort of service and what we’re trying to do would benefit the council and the local primary care trusts because if we can provide short respite breaks it might help ease up some of their services.”

There are more than 255 families with disabled children using Wakefield Council’s care services, including residential centres and home visit nursing teams.

A spokeswoman from NHS Kirklees and NHS Wakefield, said: “Although there are no nurseries dedicated to disabled children we support access to mainstream child care and leisure activities.”

The McCormacks’ proposed nursery, in Hemsworth, will be able to look after up to six children during the day.

Laila Milly was cared for at Martin House Children’s Hospice in Wetherby, which provides short-term care and holidays for children with life-limiting illnesses.

Mike Miller, paediatric consultant at Martin House, said: “There are more than 1,000 disabled children in the Yorkshire area and we can provide for around a third of them.

“The service the McCormacks want to create will compliment Martin House’s work and support children who have disease that will not affect their life expectancy, but still need to have complex and respite care.

“It is a very brave thing to do and being able to keep the momentum going after Laila’s death shows that you can learn a lot from any child.”

The Laila Milly Foundation is moving steadily closer to its £60,000 target, having so far raised more than £40,000 through fundraising events.

The charity’s next fundraising event, including a 5k fun run, children’s activities, barbecue and live bands, takes place at Nostell Priory on September 11.