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Nicholas fights for his life

The plight of ten-year-old Nicholas Damin, who has been fighting for his life since birth, captured the attention of members of the Putney Rotary Club last Monday evening (1 September). His uncle, Greg Manton, told his audience that Nicholas suffers from Barth Syndrome, a genetic disease affecting growth from which only boys suffer and which currently affects 16 boys in the whole of the United Kingdom. The gene is usually passed from mother to son. Without proper diagnosis and treatment, this disorder can often be fatal.

Greg Manton told his audience that, thanks to fundraising efforts of the Barth Syndrome Trust, a fast groundbreaking test is now available. Treatment consists of a number of heart medications, sometimes a heart transplant, and antibiotics. Injections are used to stimulate the bone marrow to make the white blood cells needed to fight infection. Barth Syndrome has caused Nicholas to suffer repeated bouts of ill health: severe heart failure, recurring infections and fatigue, among other things. As a result, he has lagged behind in his growth and is the same size as his five-year old brother, Matthew.

Nicholas suffered heart failure 12 hours after birth, as well as having pneumonia. Further problems followed and a year later his parents, Michaela and Marco Damin, moved the family back to England from South Africa, where Nicholas was born. This was to give Nicholas the opportunity to attend Harefield Hospital near London. Doctors placed him on the heart transplant list on his first visit. The syndrome was diagnosed when Nicholas was almost three years old. It takes its name from a doctor in the Netherlands, who was the first to put together the complex set of symptoms into a recognisable syndrome.

The Barth Syndrome Trust is a collection of affected families, doctors, scientists, volunteers and fundraisers who are all working together to help Nicholas and others like him. Rather than wait for science to advance, the group have pooled their resources to achieve their ambitious goals with the limited resources they possess. The Trust brings together specialised clinics. Activities include an annual conference and medical gathering at Bristol for the affected boys in the UK to meet doctors and other families.

So far the group has raised thousands of pounds to help fight the disease. An important part of its activities is to spread awareness of the condition, so that families can overcome the crushing isolation and lack of knowledge which had existed before diagnosis of the condition.

01 Sep 2008

Notes to Editors

Rotary is a worldwide organization of business and professional leaders that provides humanitarian service, encourages high ethical standards in all vocations, and helps build goodwill and peace in the world. Approximately 1.2 million Rotarians belong to more than 32,000 clubs in more than 200 countries and geographical areas. Members carry out this work in their community and/or overseas by giving their time and their expertise.

A Rotary Club is open to men and women who are business, professional or community leaders who want to use their experience for the benefit of others. Paul Harris formed the world's first service club in Chicago on 23rd February 1905. The name Rotary is derived from the early practice of rotating meetings among members' offices.


For further information about this news release, please contact Jane Hammond [Email]

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