I am doing a 36 mile bike
ride (the camel trail from Padstow to Bodmin in Cornwall and back) on the 6th
October 2019 in aid of the Primary Ciliary Dyskinesia Family Support Group www.pcdsupport.org.uk
The reason I am doing this is that two of my children Ralph who is 7 and Ivy who is 3 have been recently diagnosed with Primary Ciliary Dyskinesia (PCD) which is a rare genetic lung condition they were born with and will have all their lives. Ralph has suffered with serious and recurrent lung infections throughout his life, such as Pneumonia and Pseudomonas to name just two, he also had problems with his hearing and has suffered with ear, nose and throat infections monthly since he was a baby, we were told for years by doctors that he would grow out of it and his chest was clear. Unfortunately, as It took so long to get a diagnosis he also has bronchiectasis on both lungs, Bronchiectasis is a long term condition that is not reversible where the airways of the lungs become damaged, abnormally widened, leading to more risk of infections. Ivy spent the first few weeks of her life in special care due to collapsed lungs and Pneumonia and like her brother ralph has suffered with chest, throat and ear infections constantly.
People with PCD have faulty cilia which are microscopic hair like structures that have loads of functions within the human body. The main problems they cause are repeated chest infections, hearing problems, sinus problems and infertility. Since Ralph and Ivy have been diagnosed they have to have physiotherapy twice a day and sometimes even more to help clear their lungs and regularly take antibiotics orally and through a nebuliser to treat the infections.
PCD Is rare and it is a lifelong condition that at this point in time is not
curable, I have decided that I now want to spend my life raising awareness and
funds to help other families with the condition and also to raise money for
research so that one day it will hopefully be curable.
As you can imagine telling a child they have something that will never go away and that they now have to spend a large portion of their days doing therapy, is not the easiest thing for them to deal with, therefore, I am also looking in the
near future through another event which I will post about at a later date, with
the help of medical professionals I know to raise money to develop apps and new games that make the physiotherapy side more fun and less of a chore for
children, something that could hopefully also be used with children with other diseases
such as cystic fibrosis etc.
The PCD Support Group is a registered charity which provides support to patients with PCD and their families. They also help raise awareness of the condition to the medical profession and provide an up-to-date information service. They rely entirely on donations so please give generously.
This is my first event and if it goes well and I don’t pass out in the forest after
mile 10, I will be entering the London to Paris next year. Exercise is vital
along with physiotherapy for those with PCD to help clear their lungs, so I am
also doing this to show my kids, that exercise is fun and Ralph and Ivy are
going to do the first few miles with me.