THREE children - Alycia Ellis, Robbie Davies and Jack Pike - all have cerebral palsy and need the same life changing operation.

Two have been told they can't have it on the NHS and one is waiting to hear. Their families are now raising in the region of £50,000 each to have the operation privately, with some even considering having it done in America. All week we will be talking to the families about the emotional rollercoaster they are living through, beginning with Natasha Ellis.

WHEN Alycia was first diagnosed, it was just absolutely mind-numbing, completely boggling...

thinking what on earth we would do, what direction our lives were going to go, where to turn to. We just didn’t have a clue.

At the beginning I couldn’t even watch any videos of children in the same situation or do any research about it. It used to hurt me because I just didn’t know what the outcome was going to be for Alycia, especially when they first told us. She was just so little and didn’t know what was going on, we had no idea if she would ever walk, talk, crawl or anything.

As a parent you try not to assume the worst but when you feel like you’ve got no-one to talk to, especially in the professional industry, it is not great.

We had no answers from the local NHS, nobody seemed to have any answers. It was always ‘maybe this, maybe that’ and unless you start probing them you don’t get anything back.

Being a nurse, I can understand that NHS funding isn’t always available and there has to be a budget, like with everything, but if the operation in America has been a success for so many people in the UK, it is difficult to understand why it is not available to everybody here. And what exactly is the NHS basing decisions on? How do they decide whether or not a child qualifies for the operation? I want to find out what exactly has been said as to why they refuse it.

It is particularly annoying that the one time in our lives we are relying on the NHS for help, we can’t get it. It does aggravate us that there is help out there, but it can’t be given to our daughter in this country.

All of us mothers become so frustrated about it because we just don’t understand how they can say no to our children – no real depth has ever been given to us as to why they feel the operation is not necessary. We are so frustrated and so annoyed as parents.

When Alycia was about two or three, until just about a year ago, she used to suffer with so much pain with her legs, where her body was stretching and growing. She used to cry a lot about her back and legs hurting. If we tried putting her in splints it was so difficult for her, and it was recommended that she wore them for eight hours a day, which is difficult for any child.

The one thing that is disheartening and what we do feel let down by is the physiotherapy they are given. As parents, we are given a list of exercises to do with them, but we aren’t professionals so we could be twisting the wrong muscles and doing more harm than good. That is what we feel really let down about.

It can be hard looking after her, but she is my child and I don’t know any different – I know I have two able-bodied children as well, but I have never seen it as being a hindrance and we don’t get upset about it anymore.

Her sister, Aaliyah, is brilliant with her. I think she realises she needs that extra bit of help , and it’s not like it is a burden for her to help out with little things like toileting that we would all take for granted – Alycia needs someone with her.

For Aaliyah it can become a bit of a hindrance to her if I am busy, so I say ‘It’s your sister, you have to be there for her’ and I can’t fault her for it at all.

If she goes out to play she will always help Alycia and she is very proud of her.

It sounds odd, but in a way I am thankful that my children have grown up having a sister with a disability because they won’t be so naive to the world and they’ll be so much more understanding, as will Alycia.

Alycia does understand about her disability. She doesn’t quite know how she came to have cerebral palsy and she doesn’t understand what exactly it is doing to her body but she knows she has it and she knows her legs are not quite like other children’s, that she needs to work harder and that she needs an operation.

But she is just like any other six-year-old, and a lot of people say that whenever you talk to her she seems so much more grown up in the way she speaks She is a selective mute and it has taken her about a year to talk to her teacher, she just wouldn’t speak.

When I first left her at nursery she would scream the place down – she was used to me giving her all my attention all day, every day, so it was difficult trusting someone else with her for six hours of the day. Even now I don’t trust friends to know how to look after her, I will only leave her with family.

But in the past year, she has got a lot better and she is improving all the time.

It’s amazing that kids these days are so understanding of her disability, although you will occasionally get a child asking ‘why is that girl in a wheelchair?’ Alycia will just turn around and say ‘because I am’ – she has always got a comeback and she has no fear.

We went to Thorpe Park recently and she wanted to go on all the high rides – she loves anything that gives her a bit of a thrill.

We are feeling much more hopeful now about her future than we were at the beginning.

They say the perfect age to have the operation is between the age of seven and 11, so Alycia is at the perfect age.