The Wistaston couple raising awareness of meningitis
PUBLISHED: 00:16 03 March 2011 | UPDATED: 18:58 20 February 2013
Little Charlie Mann died after he contracted meningitis but the three-month-old is now the inspiration behind a campaign to save lives. Emma Mayoh reports <br/>PHOTOGRAPHY BY KIRSTY THOMPSON
It was there in grey and white. For days Katy and Chris Mann had thought through every possible scenario on how life might be after their three month old boy Charlie contracted meningitis.
Theyd considered how they may have to adapt their house if he was in a wheelchair, decided to learn sign language if he had hearing problems and agonised over all the ways they could make their babys quality of life the best it could be. They knew they could cope with anything, as long as they could take Charlie home.
But when doctors at Alder Hey Childrens Hospital showed the Wistaston couple a scan of his brain, they realised all hope was lost.
Katy, 31, said: They showed us the images of his brain and told us the white bits were parts that were damaged and the grey areas were healthy. Every area had white patches, some of them were big patches and they were on his brain stem too.
Until that point we still had hope. We had come up with all these different scenarios but then the scan showed how bad it was. I couldnt stop crying. We had spent a lot of time waiting for something to happen. But when it did happen, we didnt want it to.
After that meeting we just went into a room on our own and cried. We were told Charlie was so badly brain damaged that he couldnt survive without life support. They told us he wasnt going to survive. It was hard to hear but at least we knew.
Then we had to decide when we would turn his life support off. We feel lucky to have had this time with Charlie and our family to say goodbye.
When we turned the life support off, the three of us lay in bed together, the lights were turned down low and there was none of the beeping of the machines any more. It was a very peaceful experience. It was nice to be with him.
Charlie, who was first treated at Leighton Hospital in Crewe before being moved to Alder Hey Childrens Hospital, had not shown any of the symptoms typically associated with meningitis.
He had a temperature - doctors thought it was just a virus at first - but it wasnt until a few days after he fell ill that the recognisable signs started to show, although he never had the rash that is often associated with the disease. Tragically, by then it was too late. He had a particularly nasty strain of the disease, Pneumococcal Meningoencephalitis, which causes particular damage to the brain.
The couple, who also have a three year old son, James, could have been forgiven for wanting to lock themselves away after their ordeal. But they were determined Charlie would not be just another statistic.
Charlies Story, a blog written by Katy, began as a way for the couple to remember the events of those few days last October. It was never meant for anyone else to see, but when Katy, showed what she had written to a few family members and close friends, she realised it could help others. She posted a link to her blog on Facebook and within 48 hours there had been 6,000 hits.
Katy said: For me it just felt good to get it all out. It was really hard to do because I had to relive everything but once I had done it I felt relief. More and more people started to read it. Its a bit weird to think that thousands of people have read your diary.
Katy and Chris are now campaigning to raise awareness of meningitis and its symptoms. More than 150 celebrities have now backed the couples campaign, including Gordon Browns wife Sarah, comedian Ed Byrne, supermodel Christy Turlington and Little Britain star Matt Lucas who all responded to the couples appeal for help by putting a link to the blog on their Twitter profiles.
The number of people who have read and related to Katys blog was just as much of a shock for Chris.
He said: All these people were reading it and we started to think we might actually be able to help. People would be able to know the signs to look out for. People always think about the rash but that doesnt always happen and there are lots of other symptoms.
People were asking if they could put a link on their website to Charlies Story, its just amazing and that is all that we wanted and hoped for. We wanted someone else to read it, recognise the signs and then be able to get help.
To date, almost 60,000 people have read Charlies Story, The Meningitis Trust have said the blog is the second largest contributor of traffic to their website and more than 8,000 has been donated to the Charlie Benjamin Mann Tribute Fund in the months since he died.
What we have been through is every parents worst nightmare, Chris added. We still cant quite believe it happened to us. It becomes more realistic as time goes on. Its still getting harder every day, rather than easier because at first you are in complete shock. Even now it doesnt feel real.
But the thought that Charlie may have helped to save another persons life is tremendous. To know we might be helping and could help to save someone elses life as well as raising awareness of the symptoms to look for helps us carry on.
And for older brother James, Charlie will always be the brightest star in the sky who he says goodnight to every evening before he goes to sleep.
signs and symptoms
A rash is not the only symptom of meningitis. Here are some other signs to look for. For more information visit www.meningitis-trust.org.
Fever with cold hands and feet; Pale blotchy skin; Spots/rash; Refusing food and vomiting; Unusual cry/moaning; Fretful, dislike of being handled; Tense, bulging fontanelle; Drowsy, floppy, unresponsive; Neck stiffness, dislike of bright lights; Rapid breathing or grunting
Convulsions/seizures; Sever headache; Stiff neck; Convulsions and seizures; Dislike of bright lights
How you can help
You can read Charlies Story at Katy and Chris website charliecheekychops.blogspot.com.
You can help them raise more by logging on to