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Extract from Claudia Calleja's article "Trust in Sven's future" in Times of Malta 29/12/2008
On Sven Mifsud's fourth birthday, on Christmas Eve 2008, he received a gift that will boost his chances by helping him and his 26-year-old single mother Tracy to cope with rising expenses brought about by by the very rare condition he suffers from.
He was nominated as the beneficiary of the Rotaract Malta La Valette Charity Trust Fund that contains the initial sum of €10,000, donated by an anonymous foreign benefactor, and which fund will now be open to donations from the public.
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Anyone interested in donating money to the trust fund can do so through any HSBC branch by asking for the account called Rotaract Malta La Valette Trust Fund. For direct transfers the HSBC Account number is 006-166490-050 (High Street Sliema Branch). Your generosity is welcome.
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His condition, called Proteus syndrome, involves the disproportionate overgrowth of his left leg and he will have to undergo several operations throughout his life.
When Sven was born, his mother immediately realised that something was wrong with his left leg and that his foot was larger than normal. When he was about four months old he was diagnosed with Proteus syndrome that had never been detected in a Maltese person before. Only about 120 cases have been diagnosed worldwide.
As Sven grew, his left leg and foot started to outgrow him. It became difficult for him to carry the weight of his large foot and when he was about 18 months old it had to be amputated.
Two years ago, Rotaract Malta La Valette launched a campaign to raise awareness about his condition and raise the funds which his mother needs to cope with increasing expenses.
Early this year, Sven will have to undergo an operation on his left knee to straighten his leg. This will be one in a series of operations to keep his condition in check. When he turns 21, he may even need an amputation.
The trust fund, a joint initiative between Rotaract Malta La Valette and Rotary Club La Valette, will help Sven and his mother with expenses that range from buying special trousers and shoes that fit Sven's leg to buying a prosthesis leg costing about €40,000 in the future.
While Sven is the first beneficiary of the trust fund, others who are seriously in need of assistance can be nominated to become beneficiaries of the fund during its 50-year duration. By its very nature, a trust fund ensures that all money donated will be received by the specified beneficiaries and used for the proper cause.
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