A MUM wants to raise awareness of a disease her five-year-old son suffers from.
Joanne Proctor’s son Charliejo was diagnosed with cystic fibrosis just a week after he was born after having problems with his bowels.
Charliejo, who is known in the family as Charlie, is now five years old and Joanne faces challenges with her son daily but she says the biggest challenge is how little awareness there is of the disease.
Joanne, 32, said: “Cystic fibrosis is not very well-known but it is one of the most common life-threatening illnesses.
“There is no advice or support out there so I don’t know what to expect when Charlie gets older and people don’t know how to treat Charlie.”
The disease affects Charlie’s internal organs, especially his lungs and digestive system by clogging them up with mucus. This makes it difficult to breathe and digest food.
Charlie must take tablets before eating to make it easier to digest the food. He also takes vitamins to boost his immune system but struggles with playing sports at school.
It was only when Joanne moved to Glen Crescent in Stamford six-months-ago and she registered her son at St Augustine’s Primary School that it was brought to her attention how little awareness there was of the disease.
She said the teachers at the primary school had “no idea what to expect” but took on the challenge and brought in a cystic fibrosis nurse to help train Charlie’s teachers on what tablets he has to take before meals.
Joanne has nothing but praise for the school.
She said: “They have been absolutely fantastic and Charlie’s teacher in particular is so good with him now. They are also really understanding about him having to take time off for hospital appointments as well.”
Despite Charlie’s problems, Joanne said he still enjoys meal times.
She said: “His favourite thing to do is eat and taking the tablets doesn’t put him off. He eats more than his brother and sister.
“As he gets older I’ll explain to him what cystic fibrosis really means but at the moment I try and get him to live every day to the fullest.
Joanne is also a single parent to six-year-old Sophia Smith, Marcus Swain, eight, Lauren Proctor, 13, and Sarah Proctor, 14.
She said: “It is a challenge for all of us every single day. Charlie has to have physiotherapy twice a day and takes between 30 and 40 capsules. He has had to have sleep studies because he was stopping breathing in the night and has to have grommets in his ears to keep them clear.
“It can be quite upsetting but we live every day as it comes and it is never a chore looking after Charlie. It affects him but he takes it all in his stride.”
When she contacted cystic fibrosis sufferers through a social networking website to find out what to expect when Charlie gets older, she came across Caroline Heffarnan, who has produced a nude calendar to raise money for the Irish charity CF West.
Many cystic fibrosis sufferers do not live to be 40 and struggle to have children.
To thank Caroline for her advice, Joanne is promoting the calendar which is available to buy by visiting www.cfwest.ie
Joanne said: “I think it’s fantastic what they’ve done to put this calendar together. Many of the people in it suffer from cystic fibrosis and they want to raise money for a new unit at a hospital in Mayo.
“I think it is a fantastic calendar.”
Joanne is also hoping to raise funds for the CF Trust in the UK next year, which supports sufferers and funds research into a cure.
Joanne added: “The CF Trust might not find a cure in Charlie’s lifetime but I want to know I’ve done my bit to help other children like him.”