NEWS — 17 December 2013

Marian Granaghan with daughters Seanie and Sinead

By David Hennessy

A 22-year-old’s climb of Africa’s highest peak, Kilimanjaro continues to raise funds for the research into her sister’s rare condition, Fibrodysplasia Ossificans Progressiva. Sinead Nammock climbed Kilimanjaro in August and has raised £38,000 so far for the country’s only centre that researches the condition that her younger sister Seanie lives with.

Fibrodysplasia Ossificans Progressiva (FOP) is a genetic disorder that causes bone to grow on muscle, tendons and tissues, creating a second skeleton that imprisons the body. It is a progressive disease and there is currently no cure. Sometimes referred to as Stone Man Syndrome, the condition slowly turns its sufferers into living statues.

FOP affects roughly one in two million people and seventeen-year-old Seanie is one of only 45 UK sufferers. Because it is so rare, the government provides no funding for research into the condition.

The Botnar Research Centre at the University of Oxford is the only UK facility working to find a cure for the condition but the research team there require £120,000 a year so it is a constant fund raising battle for families like Seanie’s that have faith in its work.

Sinead Nammock at the peak of Kilimanjaro in August

Sinead’s climb has already raised £37,959 but the family is still aiming to raise a total of £60,000. The family, who have roots in Killorglin in Kerry and Kilfian in Mayo, would be devastated to see the Botnar Research Centre stop its research into FOP as researchers have made great progress in recent years and are working with a compound named dorsomorphin that stops ectopic bone growth. It is believed dorsomorphin could hold the key to FOP’s treatment and even cure.

Seanie’s mother Marian Granaghan told The Irish World in August: “It is important to keep the research centre open because it is our only hope. It is. There’s no other hope. They are working on a compound but it’s going to take years of research to make sure that as well as stopping bone growth, it doesn’t stop anything else. It’s imperative that the research continues.

“She’s got a life to lead like everyone else. She’s got to have hope for the future that something can be found.”

Seanie’s arms are already locked in position bent across her waist which makes balancing a problem and walking uncomfortable. The family now dread the thought of her second skeleton spreading to her lower body forcing her to make a decision of whether she wanted to sit or lie for the rest of her life.

Sinead’s Botnar Centre appeal is at: http://uk.virginmoneygiving.com/team/climbingforacure.

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