Sven Mifsud runs into the room and climbs onto his young mother before hopping onto the carpet where he mimics one of the wrestling matches he loves watching on TV.

Like most little boys Sven, who turns three on Christmas Eve, is bursting with energy and zooms across the living room as he screeches with enthusiasm at the mere fact that he is providing entertainment to a group of adults.

He finally stands still to have a sip of tea from his favourite Liverpool FC mug, and it is only then that one realises that this tiny people-magnet had his left foot amputated when he was just 18 months old.

Sven is the first Maltese to be diagnosed with Proteus syndrome, a rare condition that causes overgrown skin, bones, muscles, fatty tissues, and blood and lymphatic vessels. There are only about 120 other cases worldwide diagnosed with this condition. As a result, Sven's left leg will keep growing and he will have to undergo various operations.

Tracy, Sven's 25-year-old single mother, glances at her son, who is by now trying to jump off the back of a sofa, and says: "He's a clown. He's so caring and I can't live without him. I have an angel."

She did not realise anything was wrong during her pregnancy. But when Sven was born it was immediately apparent that his left foot was deformed and larger than normal.

"It was Christmas Eve... and I took it very badly for various reasons. My father had just died and my mother had been diagnosed with cancer. Apart from that, my relationship with my partner ended.

"I remember I got really upset when the babygrows did not fit him. Nothing was fitting his foot," she says, adding that finding trousers that fitted properly remains a problem as his left leg is thicker than the other.

Doctors wanted to amputate Sven's foot immediately but his mother resisted. When he was about four months old he was diagnosed with Proteus syndrome and, as he 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.

Tracy says that Sven knows all about his condition. When he initially started going to Kindergarten, she recounts, he would go home and tell her that the other children were refusing to play with him.

"But now everything's fine. He came home and told me he had explained to another boy that he had something wrong with his leg. He said the other boy was short, which made me laugh because he's very tall for his age," she smiles.

Since Sven's birth his mother has been to countless paediatricians. She also keeps in contact with an American doctor who specialises in Proteus syndrome. However, she was disappointed when the Maltese doctors did not take up his offer to come to Malta and operate on Sven. The reason they gave her was that they would perform the same operation.

Next year Sven will undergo two operations, one on his left knee to straighten his leg and another to slow the growth of the leg. Meanwhile, Sven needs a specialised shoe with a custom brace and a thick sole to compensate for his condition. If the syndrome persists a potential 'cure' for Sven may be amputation when he turns 21. A prosthesis leg costing about Lm17,000 (€40,000) would then be needed.

Apart from having to face expenses related to Sven's conditions, Tracy is also taking care of her three siblings - aged 13, 10 and nine - who were recently orphaned when their mother passed away.

Another problem is that the family lives on the third floor of a state-owned block with no lift, posing a daily ordeal for Sven. Tracy is seeking Government assistance to move to a ground floor apartment in the same locality.

Looking to the future of her "angel", Tracy has two main wishes: "I would like him to independent. And if, in future, his leg is amputated I want to get him the prosthetic leg that can help him lead a normal life.

"He already seems to be quite independent but I worry that, as he grows up, his condition will cause him anguish... I want a normal life for him," she says.

Rotaract Malta La Valette, a non-profit voluntary Rotary-sponsored service club, is raising funds so that Sven may lead a normal life. Earlier this month the club collected Lm200 during a treasure hunt. Anyone who wants to help Sven may send an e-mail to or phone 9942 7491 or 9982 8484.

Proteus syndrome

The condition involves a typical growth of the bones, skin, head and a variety of other symptoms.

Proteus syndrome is a progressive condition, wherein children are usually born without any obvious deformities. As they age, tumours as well as skin and bone growths appear.

The severity and locations of these growths vary greatly. There is also a risk of premature death due to deep vein thrombosis and pulmonary embolism caused by the vessel malformations that are associated with this disorder. Further risks may occur due to the sheer mass of extra tissue.

The disorder itself does not directly cause learning impairments.

While doctors can treat some of the symptoms - by removing excess soft tissue, for example - there is no known cure. Prosthesis and other special tools and clothing can also help improve quality of life.

The syndrome became widely known when it was determined that Joseph Merrick, the patient depicted in the play and film The Elephant Man, had severe Proteus syndrome.

For more information visit or http://www.proteus-syndrome.org.

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