Our daughter Laila Milly was born in 2010 with a rare neurological condition called Aicardi Syndrome. Her brain had not developed fully, she had complete absence of the corpus callosum (central part of the brain) this caused her to have up to 30 seizures (fits) per day. Her other symptoms were cardiomyopathy (enlarged heart), cleft palate, poor eyesight (lesions on the retina) and she had to fed directly into her stomach (via gastrostomy) due to an unsafe swallow. We knew nothing about her condition until she was 5 weeks old, nothing was picked up during pregnancy, Laila was our first child and everything appeared to be fine at birth.
Laila needed 24 hour care, we were lucky that we had a fantastic Jigsaw Team (Children’s Palliative Care Team made up of nurses, carers and nursery nurses) but we felt that one to two hours a week from the Primary Care Trust is not enough support for parents of children with serious and complex conditions.
In memory of our beautiful daughter Laila Milly 3/3/2010 – 2/3/2011
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 relevant training to parents.
At our day centre we aim to enhance the quality of life for the children and their families within our local community and surrounding areas. We provide care and support in a secure environment for each family and child at a time when they need it the most.
Laila Milly passed away on 2nd March 2011, a day before her 1st birthday. She was our brave, beautiful little girl who we miss every day. She is our inspiration which is why the Foundation and day centre was set up. Please get involved, raise awareness of our charity, start fundraising, drop us an email, letter or call us if you have any fundraising ideas that you would like help with!
Thank you for taking the time to read about our charity. We are so passionate about providing families with the support that they need and hope that you are able to help us in whatever capacity you can to enable us to continue to do so.
Maya and Steve McCormack xxx
firstname.lastname@example.org Registered charity No. 1137737
75a Kirkby Road
9.30-11.30am New Story Session
1-2.30pm Sensory Play
9.30-11.30am Stay and Play
1-2.30pm Stay and Play
12.30-2.30pm Sensory Play