But visiting Daisy Chain and her favourite animal – pony Dynamo is a beacon of light for the family.
Mum Claire says, ‘Carly loves going to Daisy Chain. We have been visiting for over four years now and the Activity Days are fantastic for her.
‘I remember the very first time we set foot in Daisy Chain and we were made so welcome, everyone was really friendly. All the staff are approachable and helpful. As soon as Carly met Dynamo he was her favourite.
‘The facilities are also amazing. Carly loves being outdoors no matter what the weather so the play areas are great for her. She has her routine which she likes to follow and part of that is to whistle to the birds and chickens until they whistle back.’
Without Daisy Chain Claire and husband Derek would have nowhere to take Carly. Says Claire, ‘Mainstream environments are too noisy and busy for Carly, she can’t even cope with a supermarket so finding things to do to occupy her can be very difficult.’
When Carly was born everything was fine until at 16 months old she had a prolonged seizure. ‘We didn’t know if she would even make it, Claire reflects. ‘She had encephalitis and was then left with the epilepsy, she was in intensive care five times with prolonged seizures.’
Since then life had been tough for the family. Mum Claire sleeps with Carly so she is immediately alerted if a seizure is to occur. They are waiting for Carly to be fitted with a Vagus Nerve Stimulator involves delivering electrical impulses to the vagus nerve. It is used as an add-on treatment for certain types of intractable epilepsy.
‘We hope that she will then be able to come off and reduce some of the medication she is on because it slows her development down as well as her brain,’ Claire explains.
It was when Carly reached four years old, Claire and Derek began to notice traits in her behaviour they believed could be autism. ‘At first we could not get a diagnosis as they thought it was sensory issues but eventually she was diagnosed. Carly used to be non-verbal but then she had her adenoids and tonsils removed and now she speaks.’
Despite Carly’s improvement and development, the family enjoy the safe surroundings of Daisy Chain where they can feel free to be themselves and know other families and staff understand their daughter. ‘Everyone going to Daisy Chain is there for the same reason and they don’t judge if a child gets anxious and their behaviour changes. It means you feel relaxed and not on edge.’