Raising awareness of Crohn's disease
Read Talking Point columnist Sam Billingham's latest column for the Express & Star.
I recently met a mum who wanted to share her story with me. As I sat opposite her in the coffee shop I could feel her pain, even though she was smiling and had a twinkle in her eye. As well as feeling her pain, I could feel her passion too.
She was telling me about her daughter, Isabelle who started to miss a lot of school when she became ill at seven or eight and three years later she was diagnosed with Crohns Disease.
Crohns disease is a lifelong condition in which parts of the digestive system becomes inflamed.
Isabelle's mum, Gail, told me how she put a care plan in place for her at school and arranged a meeting with her daughter's form tutor, SENCO officer, medical officer and headmistress, where every aspect of her care and medical needs were discussed and written down.
Gail spoke in the meeting about the total unfairness of attendance awards where pupils receive weekly treats for 100% attendance. How the school was literally rewarding children, who actually at that age have very little part to play in being responsible for getting to school, for turning up every day and being fortunate enough not to have a chronic illness. Gail's suggestion was an "attitude to learning" award for children who worked hard and wanted to learn - but because of circumstances beyond their control found it impossible to achieve full attendance.
Gail, a mum of two, wants to raise awareness on the invisible illness that has a huge impact on her daughter and has written a book called 'Rodney Meadow-Hopper, the hare who didn't care'. Her aim is to get children to talk about how they feel living with an invisible illness. Inspired to write the book because she's witness many children saying they are fine when they're clearly not.
Gail and artist Jenny Seear are currently trying to get their story printed and with any money made from it they would donate some of it to either Crohn's in Childhood Research Association or Crohn's and Colitis UK.
As I sat listening to Gail, whilst we drank coffee, my heart began to ache. Our children are similar in age, both girls and it suddenly hit me that as a parent, that could very easily be my daughter, it could happen to anyone of us, young or old. Crohn's disease affects people of all ages with symptoms usually starting in childhood or early adulthood. Symptoms may be constant or may come and go every few weeks or months.
Please show your support and help Gail raise much needed awareness on this invisible illness by following her tweets on Twitter @Gail191767369 and if there are any publishers reading this column, please get in touch to publish her book and lets get it into schools across the borough.