Euan and Gregor have PCD
Being told your child has a genetic condition can be a lot to take in. So having information that you can study in your own time at home can be invaluable.
Fiona would have found that kind of information a great help when her sons, Euan and Gregor, were diagnosed with Primary Ciliary Dyskinesia (pron: primary sill-yaree dis-kin-knee-see-a).
PCD is an inherited condition associated with an abnormality of cilia.
Cilia are microscopic hairs in the airway which sweep away secretions.
Cilia in children with PCD don't work properly which leaves them vulnerable to infections in their lungs, sinuses and ears. They also need regular antibiotics and physiotherapy to help their bodies to get rid of the mucus that collects in their respiratory tract.
Jeans for Genes has helped the PCD Support Group to provide
families with a DVD with the very latest information about PCD. The children themselves can play it at home and parents, grandparents and even teachers can use it to better understand the condition.
Fiona says; "My sons were six and four before they were diagnosed. By this time Euan had permanent lung damage on a third of his lungs and we were told that he had chronic lung disease.
"Good management of PCD is vital for children to be well and stay well and the PCD Support Group is very grateful to Jeans for Genes for helping us to give families the information they need."
Research for the future
Jeans for Genes is also funding research into primary ciliary dyskinesia through it's annual donation to Great Ormond Street Hospital Children's Charity.
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