Government won't fund £11K machine that would allow 'locked in' tot to tell mum 'I love you' for the first time

Government won't fund £11K machine that would allow 'locked in' tot to tell mum 'I love you' for the first time

A mother of a toddler with 'locked in syndrome' is being forced to find ways to raise money for a machine that can help her child communicate after the government denied funding.

According to Kennedy News, the mum of a three-year-old girl with the same 'locked in syndrome' that killed Coleen Rooney's sister is having to raise the cash for a vital computer that will allow the tot to tell her 'I love you'.

Little Sophie Edes suffers from Rett Syndrome, a rare progressive disorder that has deprived her of ever being able to speak and is slowly robbing her ability to even move.

Coleen Rooney's sister Rosie McLoughlin faced a lifelong battle with the disorder and sadly died in 2013 aged just 14.

Mum Liz Edes is forced to rely on flash cards to allow her daughter to tell her what she wants, but as Sophie loses the use of her hands even this will soon be impossible.

A state-of-the-art Tobii Dynavox uses eye gaze technology which would read what Sophie looks at on screen so that she can communicate and would give her a 'voice of her own'.

Liz, 33, is desperately seeking to raise the £11,000 needed to buy the tablet that would allow her daughter to say 'mummy' for the first time.

But Sophie's dad Mark Edes and mum Liz claim they have been told the NHS won't fund the vital equipment because they can't prove it would definitely help their daughter.

Liz, from Aylesbury, Bucks, said: "The computer would be completely life changing. It would be so much easier to know what she wants as she can get upset and I don't know what's up or how to make it OK for her.

"This would give her her own voice, which would be incredible. She would even be able to use it in school or out and about as she grows up.

"I'm so used to her not being able to speak as we have never known any different.

"But if I am ever anywhere with friends with their children then it's strange to hear all of them talking and chatting with Sophie just silent.

"I have never heard her say 'I love you'. I have learnt to grow a thick skin about it but I would always want her to say it.

"I have never heard her call me mum. It would be amazing to hear that.

"Doctors have said it is only like to keep getting worse and it's now unlikely that she will ever walk or talk.

"It is such a rare condition and no two children who have it are the same so they do not know anything for sure, but the likelihood is she won't ever be able to say she loves me."

Sophie may never be able to talk - Kennedy News
Sophie may never be able to talk - Kennedy News

Dad Mark Edes, 34, voiced his frustration that doctors allegedly informed them that the NHS can fund the machine, but only if Sophie can prove it works for her.

This leaves the poor tot in a catch 22 that she is unable to prove how effective the technology is for her if she does not have access to it.

Mark, a salesman from Hemel Hempstead, Herts, said: "Sophie will eventually have no way to communicate without this device. She can't talk and had very limited use of her hands.

"So the only way she will be able to communicate will be through eye gazing, which is why this is so important to us.

"She has already had a go on one at an event she went to and she took to it quite quickly.

"The NHS won't cover the cost of one until the child can prove how it works for them.

"But a child won't know that unless they get one, so I don't know how you get to that position. You need the equipment first to prove that.

"We use lots of flash cards with Sophie in the hope of getting her to learn how to eye gaze, but when she's limited to just the options you have on the cards, it's very hard for her to learn.

"It would mean everything to us to get this computer. The hardest thing of all is Sophie not being able to communicate.

"We see other parents saying 'shut up' to their kids but they don't realise how lucky they are that their child can talk. It's amazing how much we take for granted until you have a child who can't talk.

"We will never hear her say 'daddy' or 'mummy' and that's a big thing for Liz and it's a big thing for me.

"People called it 'locked in' syndrome and to an extent it's right. Sophie is in there and can understand you but her brain can't get it out and say what she wants to say.

"She gets very frustrated as she is there mentally."

Sophie and Liz communicate with flash cards - Kennedy News
Sophie and Liz communicate with flash cards - Kennedy News

Despite even trying one of the machines at a Rett convention and finding it helped Sophie, they applied through the NHS eight months ago and have still not been granted one.

Liz claims doctors even warned her it would be unlikely they would be successful.

Even if she were successful, the machine would only be on loan and Sophie would be forced to give it back eventually anyway.

Liz said: "Yes it is a catch 22 situation. You can get one on the NHS for free but then you've got to prove your child can use it.

"Plus, it's only on loan so they have to take it back. So a lot of families with children with Rett will have to buy their own.

"I understand they are expensive pieces of equipment so the NHS are not going to be able to provide everyone with them.

"But it is quite frustrating that we can't get one.

"We applied for Sophie to get one ages ago and we have not heard anything. It was eight months ago.

"We were told usually parents don't get much joy because obviously everyone wants one who needs one.

"So most families get sick of waiting and are forced to buy their own. It wouldn't be so bad if it was say £500, but it is a lot more than that."

Sophie was born in January 2015 by emergency caesarean and appeared healthy at first.

But at six months old she developed a neck problem that made her tip over as her head would slant to one side.

After a grueling series of tests, Liz was given the heartbreaking news that Sophie suffered from Rett Syndrome and the likelihood was the condition would progress so she would never walk or talk.

Sophie suffers from Rett Syndrome (Kennedy News)
Sophie suffers from Rett Syndrome (Kennedy News)

Liz said: "I had heard of it before but I didn't know what it was at all. The doctors explained it to me but I don't remember anything as I was so upset.

"Sophie had been able to babble like most babies will and could move around on her own but now she cannot talk at all. Instead of growing up like other little girls she has regressed.

"She was good with her hands but now her grip is failing and she is having trouble holding things.

"Sophie is quite chilled out and doesn't get annoyed but obviously it just means there is less and less she can do herself.

"She now needs 24-hour care. She needs physio as she is unable to maintain use of her joints and legs so we need to stop them going stiff.

"But she's a happy child who is not fazed by anything. She is very good when in hospital, which is lucky. She is very brave.

"Because she can't talk at all, we have to communicate with different pictures and she will point at the one she wants.

"However sometimes she is unable to even do this and has to simply gaze at the one she wants, which as the condition progresses will become increasingly the case.

"We have more than 100 laminated picture cards in folders, which can be really hard on her when the thing she wants is near the end of them. It's exhausting for her and that frustrates her.

"She currently struggles to make friends because of her condition. She goes to nursery and the kids run around and she can't run after them.

"They will talk to her for a bit and then get bored and walk away. But she can't move with them.

"If she could talk to them then maybe that would change everything and allow her to make friends.

"I'm so used to being her voice for her and it has brought us very close but it would be nice for her to do it for herself. It would give her some independence."

A spokesperson for NHS England said while they were unable to comment on specific cases, the NHS does fund eye-gaze technology 'as long as clinical assessment shows it is the best device for their needs'.

You can donate to Sophie's cause here - https://www.justgiving.com/ crowdfunding/sophieedes

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