Thanks for taking the time to visit our JustGiving page.

Throughout August some of our family did a step challenge to raise some money and awareness for Myhre Syndrome & on Sunday 26th September we are also doing a trek up to Slieve Doan & Slieve Loughnashannagh in the Mourne Mountains. We would be so grateful for any donations to this very worthy charity, we need awareness, research & funding!

Our beautiful, strong warrior Caoimhe suffers from this rare genetic disorder. She was only diagnosed last year and is the only such diagnosis to date in Ireland. There are approximately 150 cases worldwide.

She has, like all the Myhre Warriors, fought this rare genetic disorder to live her life with purpose and dignity & each person diagnosed has had so many struggles & health problems throughout their lives.

Myhre Syndrome is a serious progressive restrictive connective tissue disorder caused by a mutation of the SMAD4 gene causing progressive, proliferative fibrosis, which can affect the skin and internal organs occurring spontaneously or following surgery.
Joints are stiff, and can progress to contractures or arthritis. The rib cage is stiff (restrictive). Affected individuals often have problems with the cardiovascular and respiratory systems. Hearing loss, eye problems. Some of these problems gradually get worse and can lead to potentially life-threatening complications. Currently there is no cure.

In loving memory of all the Myhre angels gone too soon ❤️

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