We raise awareness & champion research to help PCD patients get the care they need
Story
As some as you may know our Daughter was diagnosed with PCD at 15 days old and we had it confirmed at just 2 months old. PCD effects all the tiny hairs in her body including lungs, nose, ears and fertility. This condition will be with her for life and there is currently no cure. She is going to be prone to chest infections and will have to recieve antibotics immediately to prevent damage to her lungs. Along with this condition she was also born with Situs Inversus Totalis meaning her insides are a mirror image to us(or the opposite way round)
We had never heard of PCD before and being the 1st family diagnosed in Cornwall we want to make this condition known and help other family's in the same position as us.
As her parents we wanted to take part in something challenging which is why we have entered the Eden half marathon, this is a first for us and the training has been so hard to keep motivated which is why i have set up this just giving page to raise some funds for the charity and help give us (especially mum) the support and encouragement we desperately need.
Although we had to set a limit we appreciate anything you can spare
Thanks for taking the time to visit our JustGiving page.
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We are PCD Support UK. We’re here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management and treatment.
Primary Ciliary Dyskinesia is a rare, genetic disease (1 in 7,500 people), causing recurrent respiratory infections.