Our children with CF need access to each other….

It is to this end that we would like to campaign to get all the children provided with a computer , internet access, web cam and a secure messaging site where they can let off steam and speak to each other about their lives including their CF.

When our children were born there were varying degrees of promise of a cure for cystic fibrosis ‘in the not to distant future’. This is especially true for the younger children. However, we are now nearly ten years on from when my daughter Katie was born and the ‘cure’ is still a long way off for her and all other sufferers of this condition. Although we support the CF Trust wholeheartedly who work tirelessly for the cure ( we aim to give the CF Trust half our annual fundraising each year. Last year we gave them £5000), we also feel that the quality of life of our children is equally as important. We want our children to live their lives to the full and that means that they need access to specilaist equipment and alternative ways to enhance their lives. This is not always available through the NHS or Cf Trust.

It is not generally realised that our children can never meet up. They have to be kept in total isolation from each other. The risk of cross infection is just to great. They are of no risk to the ‘normal’ population but are a huge risk to each other. Gone are the days of CF holidays where all the children could meet up and gain comraderie from others who understand what they are going through.

My daughter Katie feels terribly isolated at times and just wants to be like everyone else. She has no one that she can relate to on the level of her illness. Her friends are very supportive but they don’t understand what she has to through on a daily basis and they never will.

The following is a press release from a community nurse in Plymouth who has set up something similar to what we would like to do.

Tuesday 24 July 2007

Connecting Kids with Cystic Fibrosis

Children in Plymouth with the condition cystic fibrosis are getting connected – thanks to a special new website set up for them by their community nurse .

Children’s Nurse Paula Montgomery looks after children in the community with cystic fibrosis . She explained: “Children with cystic fibrosis can be very vulnerable to infection so they have to be kept away from each other to prevent cross-infection . This sounds harsh but it isn’t, there are national guidelines which advise this and in the best interest of the children we try and follow these .

“The downside is that the children miss out on a lot of the peer support they need . It’s difficult having a long-term condition, especially for children, and naturally they want to talk to other people with the same condition, to share experiences and emotions etc . ”

Paula hit upon the idea to get the children together – without them being in the same room – with the help of the internet . With the help of National Lottery funding, she set up a website called www.cf-kids.com

This is a website specifically for Plymouth children with cystic fibrosis . It has a members’ gallery and a discussion forum; both areas require users to be authorised by Paula before they can log in so it is a safe environment for the children to use .

Paul said: “Children use the website to introduce themselves and then they e-mail each other . We are improving the site all the time and are currently working on a discussion forum . ”

“It is probably particularly helpful for teenagers who are often busy doing other things and may not want to comply with things – like taking their medication or having physiotherapy . It’s good for them to know that they are not alone and be able to talk to other young people about it . ”

Twelve-year-old Chelsea Sheehan from Estover is a regular user of the site . She said: “I really like it because I get to talk to other people with CF and see how they are . I have met a couple of new friends from the website and it’s really helpful . I’m glad Paula did it . ”

Paula added: “Children with more severe disease spend two weeks every three months in hospital having intravenous antibiotics . We are looking for a way to fund some laptops so when they are in hospital they can have computers in their cubicles . ”