193 %
£1,937.10
raised of £1,000 target
by 65 supporters
Donate
Katy Follows avatar
Katy Follows

Katy Follows' Just Giving Page for PCD

I am running the Milton Keynes half marathon for Primary Ciliary Dyskinesia (Pcd) Family Support Group because PCD needs a medical breakthrough

193 %
£1,937.10
raised of £1,000 target
by 65 supporters
Donate
  • Team members: I am runnning with 2 of my best friends, Kate & Nicola, who are also raising money for great causes. This a real challenge for all 3 of us, having never previously run any real distance & we are supporting each other through the tough training.
  • Event: Milton Keynes half marathon, 01 May 2017

Primary Ciliary Dyskinesia (Pcd) Family Support Group

We help and inform PCD patients/families to live happy and healthier lives

Charity Registration No. 1049931

Story

I am a very proud Aunty to an amazing niece called Clover.  Clover is 9 years old and one of the funniest, most positive children you could meet.  Her irreverent sense of humour is infectious, as is her zest for life and determination to overcome any obstacle.  She is a very special girl in her own right, and not just because she suffers from Primary Ciliary Dyskinesia (PCD). 

PCD does not define Clover, but it does affect her daily life.  PCD is an extremely rare syndrome (only 3,000 people in the UK have been diagnosed) in which sufferers have abnormal 'cilia', the microscopic hairs that beat within the airways which remove secretions from the respiratory tract. The condition affects many organs in the body, but the main risk is lung disease if left untreated, or discovered late.  There is no cure for PCD .

Clover's diagnosis was relatively late and her treatment involves chest physio 3 times a day, nebulised treatments, regular oral antibiotics and hospital admissions for 2 weeks at a time for intravenous antibiotics.  She embraces these treatments with typical courage and humour, and is a well-known and popular patient at the John Radcliffe Childrens' Hospital, where she has received so much fantastic care.

Not only is PCD rare and hard to diagnose but it does not attract serious funding.  The PCD Support Group does important work by not only supporting affected families but raising awareness of PCD within the medical community to influence earlier diagnosis, correct treatment and a better quality of life for sufferers.

I'm very aware that there are many worthy causes and fund-raising events, so I'd like to thank you for taking the time to read this and for any donation you are able to make.

-----------------------------------------------------------------------------------------------------------

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

Photos

6
  • +4

Supporters

65