Despite suffering daily seizures and needing round the clock care, Izzy, from Nottingham, is a “little ray of sunshine”.
Izzy was diagnosed with West Syndrome – a rare form of epilepsy which is associated with learning difficulties – at just nine weeks. As a tiny baby, Izzy experienced between 30 and 60 seizures a day. She has never been able to walk or sit unaided and has now developed Scoliosis. Her condition is rapidly getting worse and she will have to have spinal surgery in the next few years.
Izzy can’t eat or drink and she has the mental age of five months. Because of all of this, Izzy is completely dependent on her parents Kerrie and Adam, who, in turn, rely on the support of Rainbows.
“Sadly our little girl is the worst case scenario of this condition,” said Kerrie. “It was so hard when she was a baby as I was a first time mum and I had a life that became consumed with doctors, hospitals, occupational therapists, physiotherapists and medical appointments.
“I used to look at her and think ‘why you?’ it just isn’t fair. She only recognises happy or pain; if she is crying, we know there is a problem. But she is also happy. She smiles every now and then and makes lots of noise; she is a little ray of sunshine.”
Two years ago, Izzy had a Vagal Nerve Stimulator, a device implanted under the skin which delivers pulses when a seizure starts. This has reduced her seizures to around three episodes a day.
Kerrie added: “When she was one, Izzy would be admitted to hospital every week because she couldn’t fight reoccurring chest infections before suffering from pneumonia and a collapsed lung.
“I thought that was the end and we knew we needed help. That’s when we went to Rainbows. We didn’t know what to expect but it changed our lives completely. When we went to Rainbows we felt we could breathe again and be parents. We know we don’t need to worry about her and we trust everyone at Rainbows fully.
“I don’t have anyone that I can leave Izzy with and every time we go out, we have to take so much equipment with us. So having Rainbows gives me some time where I can go and do things on my own. Also, Izzy absolutely loves Rainbows, it is like holiday for her. It is just wonderful.”
When we went to Rainbows we felt we could breathe again and be parents. We know we don’t need to worry about her and we trust everyone at Rainbows fully.