Cystic Fibrosis, Family

Little cowboys joggers: support Sarah in her half marathon for @CFTrust

Please show my sister in law Sarah some support for her latest fundraiser for the Cystic Fibrosis Trust!

In October this year she will be running the Great Birmingham Run half marathon, with her friend and running partner Becky. Sarah will be running in honour of my son Joseph and all the other CF sufferers and families out there raising important funds for the Cystic Fibrosis Trust- the UK based charity that helps raise funds, awareness, and hope for people with Cystic Fibrosis.

Joseph, diagnosed with cystic Fibrosis using the newborn screening test at 4 weeks old
Joseph, diagnosed with cystic Fibrosis using the newborn screening test at 4 weeks old
Sarah (on right) and Becky (on left) running the race for life

Sarah and Becky have been hard at work training and running various events like a 5k muddy run for cancer research, a charity that is close to Becky’s heart, and now have decided that together they can support each other through the tough but amazing challenge of training for and running their first half marathon!

Please visit Sarah’s just giving page HERE and show your support by donating whatever you can, no matter how big or small your contribution counts!

Sarah asked me to write a bit for her just giving page about why it’s important to us and how CF impacts on our lives as a family, here’s what I wrote:

“Organ transplants, diabetes, osteoporosis, constant pain, exhaustion, liver disease, infertility, intravenous antibiotics, hours of treatments and physiotherapy, shortened life expectancy, thousands of tablets, life threatening lung infections, a constant painful hacking cough, poor growth, stomach and bowl problems, coughing up blood……the list is endless. You wouldn’t wish this on your worst enemy and yet this is the harsh and bitter reality for the 9000 plus people living with Cystic Fibrosis in the UK today.

Joseph was diagnosed with the incurable genetic disease Cystic Fibrosis through the Newborn screening test at just four weeks old. Having a child with CF and being a parent or family member to a sufferer comes with a variety of challenges. Despite his condition now becoming a part of our every day life and routine, each day his family is reminded of the cruelty and unfairness of this invisible yet life altering disease.

salbutamol inhaler: Cystic fibrosis medicine www.rrandj.wordpress.com

It is hard to contemplate the idea that Joseph has a 50% chance of not reaching his 40th birthday. It’s a hard pill to swallow knowing that in order for him to reach adult hood he will need hours of treatments and piles of medication every day of his life.

In order to perform the normal yet vital bodily functions of eating and breathing toddler Joe has to endure a breathtaking amount of treatments and medications which will increase steadily as he gets older . He currently undertakes 40 minutes of physiotherapy daily, antibiotics twice a day to protect him from common childhood illnesses that could be devastating to his little lungs but almost harmless to other children, medication before all food due to his pancreas being damaged and unable to digest fat, protein and starch which in turn leads to poor growth and stomach and bowel problems. Medication to combat his gastrointestinal reflux disease and therefore a tendency to throw up, multitudes of vitamin supplements as he cannot absorb nutrients from his food which can cause a variety of problems including brittle bones, osteoporosis and poor growth and inhalers to help him breathe by opening up his airways. These everyday medications are on top of seasonal treatments such as him having to take liquid salt solution during summer as his body loses excess sweat and therefore salt through his pores and in winter he has had injections every four weeks to protect against the RSV virus- a common cold to other children but potentially extremely harmful to him.

He visits hospital every two months to see a consultant paediatrician, dietician, physiotherapist and lung specialist nurse . Joseph is terrified of hospital and this may be due to experiencing Intravenous antibiotics, injections, blood tests, x-rays, cough swabs, tubes inserted up his nose and generally being prodded and poked on a regular basis!

This cruel disease stops him from meeting and gaining support from others with the condition as cross contamination and infection controls are in place which means people with CF can not meet face to face. Even Christmas was affected- Joe had to be kept from his cousins and other beloved family over Christmas because they had coughs and colds which he might catch with dramatic consequences. CF affects so many organs in the body, and day to day life in general in so many ways it’s impossible to recount them all here.

The Cystic Fibrosis Trust is the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them. Without the CF Trust’s campaigning and fundraising Cystic Fibrosis would not be tested for at the newborn screening and it may have taken years for Joseph to be diagnosed by which time a lot of damage may have already been done. The CF Trust invest in research to help develop treatments that limit the impact of cystic fibrosis, and hopefully will one day find a treatment to beat it for good. They are committed to ever-increasing quality of medical care from birth, to young adulthood and beyond. They provide high quality, trusted information and advice to sufferers and their families ensuring they assist those who need them the most. They are determined to increase understanding of Cystic Fibrosis to the general public, campaign hard to the decision makers in the country about issues such as transplant waiting lists, and raise funds for their important work.

Please support Sarah in her brave and challenging attempt at her first half marathon to raise money for the Cystic Fibrosis Trust. Your donation can help change the future for Joe and for all the other people affected by Cystic Fibrosis in the UK today.”

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