Cystic Fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases. It affects over 8,500 people in the UK. Around 1 in 25 people (over two million people in the UK) carry the gene that causes Cystic Fibrosis. If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.

Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.

Each week, five babies are born with Cystic Fibrosis. Each week, two young lives are lost to Cystic Fibrosis.

Around half of the CF population can expect to live over 38 years, although improvements in treatments mean a baby born today could expect to live even longer.

Treatment includes daily sessions of physiotherapy, daily medication including antibiotics, vitamin supplements, nebulizers, some have high calorie milkshakes and other medicines. Around 80% of patients have pancreatic insufficiencies so they need help absorbing and digesting all their food with enzymes which

are taken before any food is eaten. They also need a high calorie, high protein diet to help gain enough weight to keep them healthy and to have a reserve to protect them when they have an infection as they can loose weight very quickly when they are poorly. When they are poorly they often need IV antibiotics to help clear any infection.

Exercise is extremely important for someone with CF to help keep their lung capacity as high as possible and to help keep them fit and healthy. For a child with CF for example, trampolining is a great form of exercise as jumping around helps to shift the mucus in their lungs.

School Life with CF

For many people this past couple of weeks has seen the return to school often a challenge especially for those starting or perhaps changing teacher, however for those with CF this can be an extra challenge.

Starting school throws many new challenges at both the child and the parent. Along with the usual worries of making new friends and being in a new environment for the child it’s perhaps the first time they see themselves as different as they realise not every child has to take medication with food or has to have a daily regime of nebulisers and physiotherapy. For the parent the challenges are not just leaving the child in the care of other people but entrusting the staff and teachers to ensure the daily regime of medication is adhered to properly.

School lunches are a good example children with CF need a high fat diet and with today’s healthy eating publicity especially at primary age this can be an issue. Schools need to have an understanding of the requirements for CF children and allow CF lunch boxes and morning snacks to contain crisps and chocolate. School lunches, now provided free of charge to all those in Infant schools may not be the best solution for children with CF due to their healthy nature. Whilst there is obviously a balance required additional calories are of key importance, some parents prefer to therefore provide their own lunches or an alternative is to allow the child with CF to add extra calories to the school meal in for form of butter, ketchup or mayonnaise.

Other aspects to worry about are within the environment, stagnant water and soil pose a risk of infection to children with CF – a major worry to parents and whilst the children have to learn the responsibility themselves infant children are often to young to understand and support from school is essential.

Support from the CF team is obviously key to an easy transition into school life, somehow schools respond better to medical professionals rather than the parent. I remember the time school moved a tank with snails into my daughters classroom – a call from our then community nurse Liz soon had them taken out. Or the time she came out of school with a freshly planted sunflower seed – thankfully on this occasion the school had used her pot so the demonstration and she didn’t go anywhere near the soil.

Physiotherapy is something else that is done each day at school, whilst not as intensive as that at home it is still a key part of the child’s daily care requirements.  In the early years supervision from a member of staff is obviously required, and the physiotherapist will visit school to advise where needed.  Physio at school can be more fun, from blowing toys – whistles, trains, birds etc, to bubbles in the playground.  However a good huff and cough will still be required at the end to ensure the loosened sticky mucus is cleared.  As they get older less supervision is required and the same methods at home can be used.  This can also be an area where the child realises they are ‘different’ being taken out of class to do the physio or even having to put the equipment back into school bags at the end of the day, if seen by others this can cause a barrage of inquisitive questions from other children.

Missing out on education is also a worry for the parents of a child with CF (not so sure the kids are overly worried about two weeks off school – except missing friends).  When a hospital stay is needed (normally a two week stay) close liaison with the class teacher is again key to ensure some work is set and carried out in hospital so the child doesn’t fall too far behind.   Anna’s Challenges have provided a laptop for school work and school work can be scheduled into the daily treatment regime in hospital.

Taking all this into consideration school can be a challenge for children with CF however close links and constant communication between the school, the hospital staff and the family will ensure the child is kept healthy and well educated.

Written by Karen, Trustee

How we can help the family of a child with CF

There are a number of ways we can now help families of children with Cystic Fibrosis that attend the CF Clinic at the  North Hampshire Hospital*:

• Travel Grants – It can be expensive travelling to other hospitals to see specialists, so we can help with travel costs.
• Activity Fund – Exercise is a very important part of keeping as healthy as possible. We can provide a grant to help pay for activities/classes/courses that encourage the child to keep active as part of their physiotherapy regime.
• Build-a-Bear voucher – If a child needs a vascuport fitted, or needs a gastrostomy tube, then we can provide a gift card so, with the help of the play team at the hospital and the staff at Build-a-Bear, they can have their very own special cuddly friend made who will have a matching feeding tube or port fitted. The child can see they are the same as them and can help flush their port or have the feeding tube changed.  Hopefully this can help them get used to what needs to happen to them on a regular basis. This really helped Anna when she had her port fitted and is how we came up with the idea
• Family vouchers – when the child is admitted to hospital for intravenous antibiotics for two weeks it can be a huge strain on the family as a whole, for the child admitted and the parent that stays with them and any sibling and parent left at home. We provide vouchers to the local cinema and also a family restaurant so the child can leave the hospital at the weekends for some quality family time and a bit of respite from hospital life. This has proved very popular as life inside one room for two weeks can be very stressful and boring!

*All these are only authorised through the CF team and nursing staff.

Any other ideas that would help the families are always welcome.  There are other ways we can help but these are just some of the main ones.

We are only able to do this with the help of our wonderful supporters so a huge thank you to everyone that has raised money for us!

Rachel