Emma explains that “I had a very bad pregnancy following IVF treatment. Charley didn’t move during pregnancy and was delivered by Caesarean as she was a breech delivery. However, she was passed by the doctors as fine. When she was very little she didn’t cry for food so I had to remember to feed her every four hours. I didn’t have anyone else’s child to compare her with so it wasn’t until I saw my next door neighbour’s granddaughter at six months that I began to wonder if there was a problem especially as Charley couldn’t hold her head up or sit and her left eye had started to turn in.

 

“When I took her to the hospital, they did various tests – an MRI scan showed that part of Charley’s cerebellum at the back of her brain had not developed 100% - this meant that the movement messages weren’t getting from the brain to the muscles. Also this damage caused other problems for Charley like her being easily distracted and her body was still like a foetus – curled up. The doctors felt that she was having constant fits because she couldn’t see properly and wanted to put her on drugs. I decided that I was not at all happy with this and wanted a non-drug therapy but they weren’t giving me any idea of what I could do to help her”.

 

Emma decided to check on the internet for alternative therapies rather than going down the medication route and came up with an organisation called Brain Solutions in Dorset. They provided an exercise and nutrition programme that Emma followed with Charley for six months before the birth of her second child Georgia. During this time Emma’s marriage ended.

 

“The programme was designed to stimulate the brain and involved picture and flash cards – Charley got bored but it worked in a way as up until that time she had had no communication so she couldn’t convey the most basic of her needs. I had volunteers to help me because there were so many aspects to the programme, like cooking organic foods, and I had to look after Georgia as well”.

 

Emma says of that time “I didn’t know a free programme like Parent & Child at NICE in Birmingham existed, I was so busy getting through day to day life looking after Georgia and Charley”.

 

When Charley started to come up to school age, Emma felt she needed to participate in a similar programme to ensure she could develop as independently as possible. She felt that schools offering Special Needs programmes would not meet Charley’s specific needs.

 

It was when she was with her children in the sensory room at a donkey sanctuary that Emma met a parent of a physically disabled child attending The National Institute of Conductive Education. When she learnt about the improvements Conductive Education could bring about she decided to take Charley along for an evaluation in October 2005 despite being told that the programme was “very strict” and “not suitable” for Charley.

 

After the evaluation “I was amazed by the flow of the programme with the conductors. Rather than just what I had been able to do for Charley, this programme was all day every day focused on improvement. I saw that there was a possibility that time, effort and work could change Charley’s life. I wanted her to start Conductive Education that day”.

 

Thanks to funding from The Caudwell Trust, Charley was able to attend for two sessions a week when she had just turned four and soon Emma saw the improvements she was hoping for.

 

“Charley was different all round – her movements were more controlled so she became a tidier eater and could drink from a normal cup. This made a big difference for me because I was constantly cleaning up after her before. She also used to throw things and scream from frustration - this has stopped. When you asked her a question in the past there was a really long delay until she answered. When she started to come to NICE her communication really took off and now she can say things like ‘yogurt’ and point to the flavour she wants.

 

“The girls play together – Georgia acts like Charley’s older sister and has adapted herself to Charley’s needs – she’s really good at signing. They do fight and argue – all children do”.

 

When Emma was turned down for Local Authority funding at a Special Educational Needs Tribunal, she decided that she could not let Charley’s improvement be halted and decided to fundraise for her place in the NICE Early Intervention Group.

 

She has been successful in raising £27,000 for the first year through her hard work contacting local companies, trusts and individuals (helped by Georgia who likes putting the stamps on the appeal letters). She even did a sponsored sky dive to raise money. Emma is now looking for next year’s school fees, with the help of local companies who are organising fundraising events for her.

 

Emma says of Charley who starred as the Fairy Godmother in NICE’s Christmas production of Cinderella this year “she’s a lot happier now. She now stands up on her own and although she shakes with pride at being able to do it, she’s standing up for longer and longer now. She’s starting to walk and she will say ‘Bike, mummy’ so that will be the next goal”.