News | Wednesday, 07 January 2009

Rotaract launches Proteus syndrome trust fund

Disproportionate overgrowth of one or more of the limbs, overgrowth of particular organs, overgrowth of tissues in the body and various types of tumors are only some of the symptoms of Proteus Syndrome. Although the illness is not automatically fatal, there is an increased risk of premature death as a result of the effects of one of its many symptoms, including deep vein thrombosis and pulmonary embolism. Although the disease captured people’s attention with the case of Joseph Merrick, popularly known as the elephant man in the late 1800s, it was not until nearly a century later, in 1979, that Proteus syndrome was properly identified by medical specialist Michael Cohen Jr. There are less than 200 known cases of Proteus syndrome world-wide, however, even in such a restricted group, it is evident that the disease can manifest in a substantial variety of symptoms and to different degrees. It is upon this bases that the Proteus Syndrome was coined by German paediatrician, Hans-Rudolf Wiedemann in the early 1980s, as an allusion to the power of Proteus, an old sea-god who in Greek was known to change his form for protection.
When Sven Mifsud was born on Christmas Eve 2004, his mother Tracey noticed that his left foot was considerably larger than his right one. Four months later, Sven was the first Maltese person to be diagnosed the extremely rare condition. As he grew older, the weight of his foot became too heavy and when Sven was just one and a half years old, his foot had to be amputated. This was just the first in a line of operations which the young child has had to endure in order for his body to be able to cope with the disease. This year, Sven has undergone two operations, one to straighten his leg and the other to slow its growth. Eventually, Sven will have to amputate his leg. Two years ago, Rotaract Malta La Valette (RMLV) started a campaign to raise awareness about Sven’s condition and collect the funds which his single mother Tracey needs to cope with increasing expenses. Through a number of fundraising activities, the help that poured in from the generous public and the support of the Community Chest Fund, nearly 2000 Euros were donated to Sven.
This year, Sven shall be nominated as the original beneficiary of the Rotaract Malta La Valette Charity Trust, the first joint initiative of Rotaract Malta La Valette (RMLV)and Rotary Club La Valette .
The Trust fund shall contain an initial sum of €10,000 which was generously donated by an anonymous foreign benefactor and will then be open to donations from the public. The money in the trust fund will be used for educational and medical purposes, as well as to facilitate the life of the benefactors. The trustees, which include a permanent Trustee and the presidents of the participating clubs shall be responsible for the administration of this fund, and are under an obligation to ensure that all the money donated is being spent in accordance with the trust agreement. It is thus being ensured that all money donated will be received by the beneficiaries.
While Sven is the original beneficiary of the trust fund, other persons who, like Sven, are seriously in need of assistance can be nominated to become beneficiaries of the trust fund within its 50 year duration.
The President of RMLV Perit Etienne Fenech, would like to thank the anonymous benefactor and Rotary Club La Valette for their energy and support. Mr Fenech also would like to encourage others to initiate trust for good causes. Interested parties may donate to the Trust Fund by means of deposit at any HSBC branch under the account’s name ‘Rotaract Malta La Valette Trust Fund’. For any information on the Rotaract Malta La Vallette Club and Rotary Club La Vallette Malta you can visit and respectively.


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07 January 2009

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