At less than a month old, Isabella Reynolds had a “blood curdling scream that went on for hours” as her body was in constant spasms.
Eventually at nine weeks old, Isabella, of Old Basford, was diagnosed with West Syndrome – a rare form of epilepsy which is associated with learning difficulties. At three months old the epilepsy evolved into clusters of between 30 and 60 seizures a day.
Now at the age of five, Isabella suffers from frequent daily seizures. Unable to walk or sit unaided, Isabella can’t eat or drink and has the mental age of 0-five months.
She needs round the clock care from parents, Kerrie Marks and Adam Reynolds, and the family also relies on the support of Rainbows Hospice for Children and Young People.
“Sadly our little girl is worst case scenario of this condition. When we found out what Isabella’s condition was I was numb, but I am quite optimistic so I tried not to get down about it,” said Kerrie. “Adam was broken. But for him, he still had to go to work and carry on. For me, I was a first time mum and I had a life that became consumed with doctors, hospitals, occupational therapist, physiotherapists and medical appointments. It was very intense.
“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 ray of sunshine.”
The family are now backing Rainbows’ Christmas Light Up a Life appeal and are urging people across the East Midlands to support the campaign.
The Light up a Life appeal invites people to celebrate the memory of a loved one who has sadly passed away, or to acknowledge a treasured person by dedicating a light on the special Tree of Lights at the hospice.
Each dedication will be acknowledged with a commemorative Christmas card and Rainbows adds the name of loved ones to its Book of Remembrance, which is on display at the hospice during the festive period. Rainbows will also send people a special Light up a Life pin badge.
Kerrie added: “Isabella was going through so much. Just before her first birthday, she spent a month in hospital with pneumonia and a collapsed lung. In November 2010, the real nightmare of illnesses began. Isabella would be admitted to hospital every week because she couldn't fight her chest infection. This went on constantly for six months before she was admitted for three weeks again with 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.”
There is no minimum donation for a light and all money raised will go to support the work of Rainbows and children like Isabella.
For more information on the appeal, visit www.rainbows.co.uk/lightupalife or contact 01509 638000, or for more information on other ways you can help support Rainbows at Christmas, visit www.rainbows.co.uk/christmas.[/vc_column_text][/vc_column][/vc_row]