Football is our tonic
Cheering on their teams helps Jane Roberts, 47, and her family forget about the worry of caring for a child with a life-limiting condition
We're all really looking
forward to the World Cup starting this month; we're a family of
avid football fans but divided between two teams so it'll
provide a rare opportunity for us all to cheer for the same team.
Myself, my husband, Guy, 48, son, Matthew, 10, and youngest,
Sophie, 4, all follow Arsenal, but our other daughter, Emma, 7,
supports Chelsea. our love of football brings us together and helps
take our minds off the physical and emotional demands of Emma's
condition. She has cystic fibrosis (CF), a common hereditary
disease that affects the entire body, but mostlythe lungs and
digestive system.
There's no cure for CF, and most people with it die young.
Because of her condition, Emma has to have daily physiotherapy
sessions to help her breathing as well as a mass of medication to
help her absorb food and overnight feeds through a gastrostomy
button in her stomach.
Emma was born seven weeks early via emergency Caesarean at royal
Sussex Hospital, Brighton, after a routine scan revealed she had
problems with her heartbeat and bowel. As she was absolutely tiny
and very fragile, she was taken to special care. It was terrifying,
she didn't feed well and for the first month of her life it was
touch and go whether she'd survive. Following tests, Emma was
diagnosed with CF.While it was a relief to learn what was wrong, it
was also devastating to know that our beautiful little baby had a
condition that would hamper and shorten her life.
Even after we took her home her health was so precarious, we
spent a lot of time in our local children's hospital. In the
summer of 2005, after a particularly difficult six weeks spent in
and out of hospital, our health visitor suggested we contact
Demelza House children's hospice, Kent. They provided us with a
community nurse, Georgina, who has been coming to our house to help
with Emma's medical needs for the last five years. She also
comes to take Emma out for some much needed fun and to give us a
break.
Demelza are our fourth emergency service.They're not just
Emma's community nurses they're our friends, a shoulder to
cry on, and a source of information when we can't contact our
doctor or consultant.They provide
endlesssupportandencouragement.It'snotjustabout Emma either,
Demelza care for all of us. Matthew attends sibling days and we
often go on family trips out organised by the hospice. Emma is in
good health at the moment but, unless a cure for CF is found, we
know she might become very ill in future. But for now, all we can
do is enjoy the moment, the support we get from Demelza and of
course, the football.
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