“Our daughter Laila was born with a rare genetic disorder called Aicardi syndrome”

Her brain had not developed fully and she had complete absence of the corpus callosum, this means she had up to 20 infantile spasms (epilepsy) per day. Her other symptoms were cardiomyopathy (enlarged heart), cleft palate, poor eyesight (lesions on the retina), cysts on the brain, repeated chest infections and lots of other defects of the brain.

There is no treatment only management and care. The prognosis for Laila was a very short life.

Laila needed 24 hour care; my wife gave up her job to look after Laila full-time. We are lucky that my wife has a paediatric nursing background and has worked with children with serious and complex conditions in the past. Not all parents have this knowledge and we feel one hour a week from the primary care nursery nurse is not enough rest for parents of children with serious and complex conditions.

“The aim of our charity is to raise funds for a Children’s day nursery, providing care for children aged 3 months to 5 years with serious illnesses and complex conditions.”

We know how difficult life can be for families who have a child with a serious illness and we aim to have care needs tailored and delivered, allowing both the child and parents to live as near normal a life as possible. We also hope to link families in our community in similar situations and provide support and training to parents.

The pressure of caring is something physically and emotionally exhausting. Siblings' needs must not be forgotten, they bear an enormous emotional burden and need special help and support too.

The nursery would provide a caring and secure environment, using an individual approach to each child and family. We will enhance the quality of life for parents and children with our local community and surrounding communities .We will provide care and a secure environment for each family and child at a time when they need it the most.

Through our own experiences we have met families at Leeds general hospital, Sheffield children's hospital, Pontefract Hydes ward and Martin house children's hospice. They have all said there isn't enough community nursing teams and a shortage of nursery nurses for respite care.

Laila Milly passed away on 2nd March 2011: A day before her 1st birthday. She was an absolute angel and full of inspiration which is why the Foundation has been set up. We want to help more children like Laila and more parents like us. Please get involved, show support, start fundraising, drop us an email, letter or call if you have any fundraising ideas that you would like help with. All fundraising events will be publicised in the Pontefract & Castleford Express & also on this website. You can join in any of the events on the 'News & Events' page.

“Our daughter Laila was born with a rare genetic disorder called Aicardi syndrome”

“The aim of our charity is to raise funds for a Children’s day nursery, providing care for children aged 3 months to 5 years with serious illnesses and complex conditions.”

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