Please help!!

Meet Sophie.

You could mistake her for being like any other typical four year old. She's sassy, bossy, loud, messy, has a wonderful imagination and loves playing with her friends. She starts full time school in September and already loves pre-school. She has a wonderful heart and will always try and help others. Her favourite toys are her Thomas the tank engine trains, peppa pig toys, her teddy Leeber and anything she can create something out of.

However, Sophie isn't like other four year olds, she has a ticking time bomb inside her that isn't always obvious to most people.



At four years of age, Sophie shouldn't have to endure hours of treatment everyday just to stay healthy or to try and minimise the damage from frequent lung infections.

At four years of age, Sophie shouldn't know what a nebuliser is.

At four years of age, Sophie shouldn't be able to name all of the medications and KNOW what they are for.

At four years of age, Sophie shouldn't know she has to stop playing to sit for up to an hour twice a day having nebulisers.

At four years of age, Sophie shouldn't have to endure pummelling and patting to loosen thick, sticky mucus from her lungs twice a day for half an hour.

At four years of age, Sophie shouldn't be mopping up her own mucus that she has coughed up so somebody doesn't stand in it.

At four years of age, Sophie shouldn't know what a port is and give it a 'pet name' (hers is called Bertie).

At four years of age, Sophie shouldn't have to miss school every month to go to hospital and have a needle shoved into her chest to flush her port, ensuring it remains working as her veins are scarred and damaged due to frequent IV access.

At four years of age, Sophie shouldn't know the names of all of the nurses on a hospital ward.

At four years of age, Sophie shouldn't have to have Intravenous antibiotics, three times a day for a minimum of 14 days for lung infections.

At four years of age, Sophie shouldn't know what a feeding tube is and be able to assemble the giving set to hook her up to milk.

At four years of age, Sophie shouldn't know the whole route to the hospital she attends, which is 20 miles away from our home.

At four years of age, Sophie shouldn't be able to assemble three different nebulisers.

At four years of age, Sophie shouldn't have to deal with chronic constipation that can leave her screaming in agony some days.

At four years of age, Sophie shouldn't have to stay indoors because the medication she is taking for an infection causes hyper sensitivity to the sun.

At four years of age, Sophie shouldn't be worrying about going to hospital and be scared because she knows what is going to happen.

At four years of age, Sophie shouldn't know that a chest xray is a picture of her lungs and will show if anything is wrong.

At four years of age, Sophie shouldn't be cheering because she has managed to produce a good sputum sample.

At four years of age, Sophie shouldn't know the words CYSTIC FIBROSIS, and be able to explain that she has it and what it is.

Sophie was born with Cystic Fibrosis. With help and luck, she may reach 37 years old.


The Cystic Fibrosis Trust needs your help. Due to cuts and the recession money is tight and the Gene therapy consortium needs to find 6 million pounds to continue its work. This is including a multi dose trial next year, which will help pave the way to finding a cure for this devastating disease.

See attached letter asking us as families to help with donations from the CF Trust, which we have all contributed. As a government, please consider helping this vital work continue by raising awareness of Cystic Fibrosis or allocating funds. Please give hope for our children and the many many people affected by this awful disease.

For once you could make a real difference.

This is our letter which will be sent to the Prime minister, David Cameron.

Another parent has asked anyone affected by CF to write a short account of what living with CF is like. Can you help??

For once we aren't asking for donations, just experiences to hopefully get our government to take notice of what living with CF is really like, learn about the vital work being done, to raise awareness and possibly gain some funding for the CF Trust.

The next phase of the gene therapy trials needs to go ahead next year. This could have a huge impact on CF across the world. See here for more details. I know I'm very keen on the Vertex drugs and believe that this will be the future for Sophie, BUT I still believe strongly in Gene Therapy and know that this is the only real shot at a cure for CF.


If any of you have a spare 10 minutes, would you be able to write a brief note about what life is like living with CF, it doesn't matter how you write it, it can be a paragraph or pictures etc and send it to feedingproblems@gmail.com. I will then print them off and send them to the parent who is collecting them all.

You can remain anonymous if you choose and it doesn't matter if you are not in the UK. Parents, grandparents, aunties, uncles, siblings and of course people with CF are all needed.

Please share this page on your own blogs, twitter or facebook pages to spread the word.

Many thanks and please consider helping us to help the CF community.

xxx