Sven Mifsud has an important Christmas message to share with children like him who have a rare medical condition: never give up.

I want to emphasise this... let them be children

Sven is the first Maltese to be diagnosed with Proteus syndrome, which involves the disproportionate overgrowth of his left leg, forcing him to undergo several operations throughout his life.

The boy, who turned seven yesterday, has already undergone three major operations that included the amputation of his left foot when he was just 18 months old. He already knows his entire leg must be amputated when he turns 18.

But the avid Liverpool fan is not letting his condition slow him down and recently started playing football with the St Patrick’s team in Żabbar.

“I like playing and kicking the ball... I would like to go to Liverpool one day,” he said.

The little fighter will also soon start guitar lessons and attends drama classes after school at De La Salle College.

He plans to become a doctor because he wants to “give medicine and help children” like him.

His mother, Tracy, does her best to ensure Sven does not miss out on anything.

“Sometimes other parents ask why I send him to football. I don’t expect him to be (Spain and Chelsea striker Fernando) Torres, but I give him a shot at everything,” she said, as Sven interrupted her to point out Torres is no longer a Liverpool player.

“I let him meet children his age. I want to emphasise this and, if I could, I’d set up billboards... let them be children. The first year was tough but life must go on and you have to make it work for you,” the 29-year-old mother said.

She recalled the difficult year after she gave birth as a single mother. Ms Mifsud had to face Sven’s condition and raise her three younger siblings since her parents passed away within a short span of one another.

When Sven was born on Christmas Eve seven years ago, his mother immediately realised 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.

He now wears a cap on his left leg – visibly thicker than his right one – to be able to walk and run.

Sven underwent another two operations – one to remove the fast-growing soft tissue and insert pins to control the growth of the leg, and another to replace the pins that bent as the leg kept growing.

Next year, Sven will have to undergo another operation to straighten the leg, as walking becomes more difficult.

“As he grows up the problem is getting worse since he has to carry more weight. He will continue to undergo surgery to control the growth and when he’s about 18 the leg will probably be amputated and a prosthetic one fixed,” his mother said.

Since Sven was about one year old, Rotaract Malta La Valette has made it one of its missions to help the boy and his family. It held fundraising events and, some years ago, set up a trust fund for him.

So far the fund has helped cover some of Sven’s educational costs but its main aim is to collect funds for the prosthetic leg that will cost over €40,000.

“At the end of the day education is very important for Sven because he will not be able to do certain jobs once his leg is amputated,” his mother said.

She is keen to thank Rotaract, St Patrick’s Football Club and De La Salle College for the support they have provided her and Sven throughout the years.

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.

Proteus syndrome

The condition involves 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.

Further risks may occur due to the sheer mass of extra tissue.

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 help to improve quality of life.

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