01 May 2014

Monster bike ride as team Marley pedal round Loch Ness

Marley Cermakova 

This April fundraiser Petr Cermakova and his friend Petr Sychra pedalled some 80 miles round Loch Ness.

Keeping their eyes peeled for the elusive Nessie, the team raised money for UK Mastocytosis - a support group for adults, parents and children with Mastocytosis. Leading the mission was Petr Cermakova – whose one year old son Marley, suffering from the condition, is the inspiration behind his venture.

A rare condition affecting the mast cells

Mastocytosis is a rare condition caused by excessive amounts of mast cells gathering in body tissues. Mast cells, produced naturally in every person’s body, are necessary to assist the body in fighting foreign threat.

Patients with mastocytosis find their mast cells don’t work effectively in reaction to a trigger - which can be anything in the environment from a drug or chemical to foods and perfume. When mast cells are triggered, they break up and release their contents all at once or by leaking.

Painful symptoms

Although the condition is not contagious, the resulting symptoms can cause sufferers a lot of pain and discomfort. Symptoms include, but are not limited to, abdominal pain, chest and bone pain, blood pressure changes and haematological abnormalities. These are just some of the consequences, which can vary on a day-to-day basis depending on triggers.

Marley’s mother, Hana explains the effect this has on their everyday life: “Chemicals are the worst nightmare for us. We can’t use some public changing rooms and shopping is always a bit of a roulette.”

Funding future research

Explaining their choice of fundraising website Hana said: “I wouldn’t hesitate to recommend MyDonate to other fundraisers. It was the first time I used MyDonate and I basically went for the one my friend suggested”. She went on to say: “BT has helped to put everything together for us – it’s easy to use and simple to operate.”

Funds raised by challenges such as this go towards the maintenance of the support group website, running conferences and supporting research into Mastocytosis.

Support team Marley on their fundraising page

Find out more about Mastocytosis

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