Laila’s legacy will help other families to cope

Little Laila Milly McCormack brought joy and happiness to her family in her short life.

Now her parents are hoping that the nursery they plan to create in her name will bring some joy to the lives of parents and young children with life-limiting illnesses. They have launched the Laila Milly Foundation to raise the funds necessary to make their dream a reality.

“Going out with Laila was like a military operation,” says her mum Maya.

“She was on oxygen and had so much equipment that it was difficult to go to normal mother and toddler groups.

“We want to create somewhere children aged three months to five years who have very complex needs can go and spend time with similar children and also give their parents somewhere to go to talk to people who know what they are going through and also to give them a much-needed break.

“It is very hard looking after a very poorly child 24 hours a day, seven days a week.”

Laila was born with Aicardi syndrome – a life-threatening condition so rare that only 300 to 500 cases are known worldwide.

It meant her brain had not developed fully and she had up to 30 seizures a day, with some lasting up to ten minutes.

She also suffered an enlarged heart, cleft palate, lesions on her retina, cysts on her brain and repeated chest infections.

There is no treatment, only management and care.

The prognosis for Laila was for a very short life and although some people with the condition have been known to live until their 40s, just the day before her first birthday Laila passed away as a result of a chest infection.

“Having somewhere like the nursery would have made all the difference to us,” explains Maya from Ackworth near Pontefract.

“We did have fantastic help from the Jigsaw team of community nurses at home, which gave us a break and allow us to get some sleep, but you are still in the house and there is a danger you can get cabin fever and feel very isolated.

“We want people to be able to come along for a few sessions a week and have a much-needed break and also some much-needed support. Family and friends are great, but they can’t be there all the time.”

Maya gave up her job to look after Laila 24 hours a day after she was diagnosed with Aicardi syndrome at just five weeks old.

“The doctor had printed out some information from the internet because it was so rare even they knew very little about it,” says Maya.

“Steve and I just hugged Laila and couldn’t put her down.”

When she was just seven weeks old the McCormacks feared they may lose their precious little girl.

“She just stopped breathing,” explains Steve. “We had to do emergency CPR and the ambulance came. We nearly lost her then, but we had her for another 12 months.”

The family did have a team of nurses come into to help them care for Laila including two nights a week which really helped them.

“Because of the number of seizures Laila had they were often during the night and although Steve and I did take it in turns, it becomes very exhausting.

“But she was such a brave little girl despite having to go through so much she never complained,” says Maya.

If the seizures went on for more than a couple of minutes the nurses would have to wake Steve or Maya as they weren’t allowed to give her the medication she needed to try to control them.

“It is very distressing watching your child go through so many seizures but we got to the point where we almost got used to them which was a sad thing to say. They tried so many different medications but there was nothing that could stop her having the seizures.”

The McCormacks don’t know whether it was the medication or the seizures, but Laila very rarely smiled.

“She smiled maybe once a month, which made each smile very special indeed.”

Laila was never able to eat and so was fed through a gastric tube straight into her stomach.

“We spent a lot of time in and out of hospital,” explains Steve. “One of the problems with Aicardi syndrome is that it made Laila very prone to chest infections. Her lungs just couldn’t repair themselves. Every time she got a chest infection her lungs got weaker and weaker and in the end she had one too many chest infections,” said Steve.

“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.

“Laila did go to stay at Martin House Hospice at Boston Spa which was fantastic,” explains Steve, a fireman and former Scunthorpe United footballer.

“But Martin House looks after children from across the region and so they are queuing up. We have worked very closely with Martin House in drawing up our plans for the day nursery.”

Steve’s parents have given them the building, which is attached to an opticians they own in Hemsworth, plans have been drawn up and they are hoping to be granted planning permission in the next week or so and then building work can start.

“We thought when we launched the idea when Laila was still alive that it would take at least a year to get to this stage, but it has only taken six months so we are really hopeful to have it up and running as soon as possible.”

The McCormacks have raised nearly £30,000 since they launched their appeal and hope to have raised £60,000 towards the total renovation costs of £120,000 by the end of the year.

“We have been overwhelmed by the amount of support people have given us,” says Maya who is doing a sponsored skydive with seven girlfriends on July 23 for the Laila Milly Foundation.

Steve and his colleagues from Pontefract and Castleford fire stations climbed Ben Nevis in full uniform to raise money for the Laila Milly Foundation.

Among a host of other events planned for this year is a black tie charity ball on Friday, November 4, at Kings Croft Hotel, Pontefract. Tickets are £25 each including four-course meal, two live bands, auction and DJ. The couple hope to make it an annual event.

The nursery will have a sensory room for the children as well as a reading and music area. There will also be a parents’ room where parents can just have some time out and spend time supporting each other.

“To know that someone is looking after your child and knows their needs is a real break,” says Maya.

“We want it to be somewhere for these children, but also somewhere for their parents.”

The Jigsaw nursing team in Pontefract has already identified 85 children with serious or life limiting illnesses who could benefit from the McCormacks’ nursery

“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 in our local community and surrounding communities when they need it most,” says Steve.

“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.”

“This will be Laila’s lasting legacy,” says Maya.