Aaliyahs primarily ciliary dyskinesia

Gemma Firman is raising money for PCD Support UK

Participants: Jeans for Genes Day

“Jeans for Genes Day ”

on 19 September 2015

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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.

Story

Our daughter Aaliyah who is 18 months old has a rare genetic condition that is called primary ciliary dyskinesia also known as pcd. 

Aaliyah was diagnosed with pcd in June this year, 2015. At birth the doctors discovered Aaliyah also had dextocardia and situs inversus. This means her heart is on her right and that her organs are reversed.

Aaliyah has to have chest physio daily and medication aswell as a nebuliser. She is more prone to infections and occasionally needs hospital stays in IVs to make her better.  

So what is pcd? It is a rare condition associated with abnormality of the cilia - tiny hairs that beat in the airways sweeping mucous out of the respiratory tract. Pcd affects aaliyahs lungs, nose, sinuses, ears, and when she is older, her fertility.

Aaliyahs pcd is 1 in 15000 and her dextocardia is 1 in 12000.

£10 will send an information pack including a DVD

£30 will buy an acapella - a device used for physiotherapy 

£100 will buy a trampoline to help children be more active to help with physiotherapy 

£300 will sponsor a researcher to attend a conference 

£500 will buy physiotherapy table for someone with pcd 

Please please donate as little or as much as you can afford for jeans for Genes Day. Any amount is appreciated! Thank you everyone x

Donation summary

Total
£356.51
+ £63.75 Gift Aid
Online
£356.51
Offline
£0.00

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