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Gemma Firman avatar
Gemma Firman

Aaliyahs primarily ciliary dyskinesia

Raising awareness and fundraising for Primary Ciliary Dyskinesia (Pcd) Family Support Group because PCD is very close to my heart

356 %
£356.51
raised of £100 target
by 23 supporters
Donate
  • Event: Jeans for Genes Day, 19 Sep 2015

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

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

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