Amelia was our little shadow

But just three weeks after her funeral, Lisa was diagnosed with motor neurone disease.

The muscle-wasting condition has left Lisa, 37, in a wheelchair.

But she and Ashley have been overwhelmed by the generosity and kindness of strangers who are helping them deal with their grief and make their lives a little easier.

Lisa describes Amelia as ‘her little shadow’.

She says: ‘We went everywhere together. We’d even do the housework together. She’d have her little dustpan and brush by the fire place.

‘She was very bubbly and lively. In fact she was very advanced. She could count backwards and she was only three’

For the first 14 months of her life Amelia appeared perfectly healthy. But one day something strange happened.

Ashley says: ‘She was in the living room and she became vacant. The colour went from her face and she became very pale, her eyes were glazed.

‘We called her name and got no response. Before that she was so alert, she didn’t miss a trick.’

Amelia was rushed to hospital and diagnosed as having febrile convulsions. They occur because young children are unable to sweat as adults do to regulate their temperature which causes them to fit.

Over the next two years Amelia went on to have around 40 more fits and, because Lisa had epilepsy as a child and a cousin died from an epileptic fit, the coupled feared that’s what Amelia had.

Lisa says: ‘We were told it couldn’t be epilepsy because she had a temperature when she fitted.

‘There were a couple of occasions where she fitted for almost two hours and was at 30 per cent oxygen.’

On April 2, 2014 Amelia had a major fit in Waterlooville town centre when she was with her grandmother.

She was taken to hospital but four hours later was sent home. Again, the family were told it was a febrile convulsion.

In the evening her breathing became shallow and a nurse came out to them.

She said Amelia was fine and they should keep her dosed up with paracetamol.

Just after midnight Ashley found Amelia unresponsive in bed and she was pronounced dead at 1.16am.

The postmortem revealed Amelia had died from am epileptic seizure.

Ashley says: ‘We asked her paediatrician afterwards, if another child came to you with a family history of epilepsy, having so many seizures which lasted so long, would you treat them differently?

‘They said they would’.

‘I said all along it was epilepsy’, says Lisa. ‘I knew but no one would listen.’

A few months after the tragedy, a relative of Lisa’s suffered a seizure and, because of what happened with Amelia, the doctors investigated the possibility of epilepsy.

The child did have it, has been treated correctly, and has not had a seizure since.

‘We like to think because of what happened to Amelia they acted differently’ says Ashley.

Together with family and friends Lisa and Ashley have raised more than £22,000 for the charity Epilepsy Research, in Amelia’s memory.

By the end of 2013 Lisa was having difficulty walking and kept falling over. She was on crutches by April 2014.

Six weeks after Amelia died Lisa was diagnosed with MND.

‘I walked outside of the consultation room and Googled it’, says Ashley, ‘and it said total body paralysis and life expectancy of two to five years.

‘I couldn’t tell Lisa.’

She has been in a wheelchair since last summer and her speech is now beginning to slur.

Asked whether they feel angry about what has happened to them they say their only choice is to move forward.

Ashley says: ‘Even though it’s two years since we lost Amelia, I think we’re still in shock. We still break down.

‘Because of Lisa’s diagnosis it didn’t give us time to sit down and properly grieve for Amelia.

‘All of a sudden I had to focus on Lisa. We’re very lucky that we are a very close family and always have been. And we’ve made some amazing friendships.’

Later this year Lisa is getting an assistance dog which they say will change their lives.

She says: ‘We hope it will help us, not just from a practical point of view, we miss having someone being dependant on us.

‘We used to do everything together. She was with me all the time.’

Ashley says: ‘When you’re faced with knowing you only have a limited time together you want to make the most of what you’ve got. We are stronger now.’

In a statement Portsmouth Hospitals NHS Trust said: ‘Following this very sad case we have re-evaluated the way in which we care for children who have prolonged febrile convulsions. We offer the family our sincere condolences.’

To see a video of Lisa and Ashley go to portsmouth.co.uk/video.

Lisa and Ashley have been overwhelmed by people’s kindness.

They recently moved from their Havant home to a bungalow in Petersfield which is easier to negotiate in a wheelchair.

But for the last 10 months they have been forced to sleep in their living room, with Lisa in a reclining chair and Ashley on a mattress on the floor to look after her because she cannot get in and out of a bed.

They launched a crowdfunding campaign to pay for a power assisted adjustable bed which they can both sleep in together and were stunned when an anonymous donor pledged £7,000.

Lisa says: ‘I was absolutely gobsmacked. It’s amazing that someone could be so kind, someone we’ve never even met.

‘It will be so nice to be able to lay together and cuddle. At the moment we spend all day in the living room.’

Following Amelia’s death they took a break in Disney World, Florida, and took Amelia’s picture in a frame everywhere they went.

Ashley says: ‘When the staff found out

what had happened they rushed us up to the Disney Castle and took us into a grand room, pushed us to the front of the queue and took photos of the three of us.

‘It was an amazing experience.’

They also met a woman called Janelle selling pearls on the beach and bought a pearl with a tiny diamond tiara in memory of their princess.

The couple and Janelle and have been firm friends ever since.

To donate to Epilepsy Research in Amelia’s memory go to bit.ly/1YPTkkG.