Each year in the UK, over 100 children are diagnosed with a debilitating, lifelong illness called primary ciliary dyskinesia (PCD). It is estimated that at least 3000 people in the UK have PCD. Symptoms often begin soon after birth, with babies needing oxygen because of difficulties breathing. The children suffer recurrent ear and chest infections, meaning they miss a lot of school. They often need hearing aids and some find that their lungs are permanently damaged, with some eventually needing surgery to have part of their lung removed or a lung transplant, typically during adulthood.
Once their illness is correctly diagnosed, children are given regular, twice-daily physiotherapy, which helps clear their lungs. Many also take antibiotics on a regular basis to tackle infections. The right treatment can relieve children’s suffering, help stop their illness from getting worse and protect their lungs from permanent damage. However, PCD sometimes goes undiagnosed, or is mistaken for other illnesses, such as cystic fibrosis or asthma, which cause similar symptoms. Even if PCD is suspected, diagnosis is complicated and unpleasant, with children having to undergo several tests at specialist centres, including biopsies of the lining of their nose.
Some individuals with Primary Ciliary Dyskinesia have abnormally placed organs within their chest and abdomen. These abnormalities arise early in embryonic development when the differences between the left and right sides of the body are established. About 50 percent of people with Primary Ciliary Dyskinesia have a mirror-image reversal of their internal organs (Situs Inversus Totalis). For example, in these individuals the heart is on the right side of the body, instead of on the left.
My son Malachi was born with Situs Inversus and Primary Ciliary Dyskinesia, also known as Kartageners Syndrome. The idea for creating the PCD Angel began, when I became captivated by an Angel Pendant I saw Fern Britton wearing on TV whilst interviewing June Brown. I had recently been in hospital with Malachi for two weeks as he had needed intravenous antibiotics and whilst in, I had read a beautiful book about Angels (Angels in my Hair) written by Lorna Byrne. I scoured the Internet and managed to track the Angel Pendant down to an Ebay store. I contacted the Jewellery Designer, Sarah Clarke of Fluid By Design who confirmed it was the exact same pendant I had seen, it eventually transpired that after requesting Sarah's address, that she lived a 10 minute walk from my home!
We found that we had a mutual love of Angels and Jewellery, as I had been in the Jewellery Trade for 22 years before leaving to become a full time carer to Malachi. Sarah was interested to learn more of PCD and she suggested creating a PCD Angel to generate funds for The PCD Family Support Group and to also raise awareness. The support and encouragement we have received has been incredible. Sarah has designed and created some beautiful pieces of jewellery for our PCD Angel Family, while I organise the sales, u-boat replica admin and raise awareness.
We would like to extend our thanks to all of you who have purchased a PCD Angel so far (and to those who will!). We have sold 100 PCD Angels, with some flying internationally! This has enabled us to donate £1000.00 to the PCD Family Support Group.
Free Postage & Packing to UK Mainland. International and non UK mainland customers please contact me for a shipping quote before ordering.
I will normally dispatch within 2 working days of receiving cleared payment.