Catching up with Rockstar Supernova Lukas Rossi

Rocker pays ‘Supernova’ visit to young Ottawa fan
By Roger Collier
Lukas Rossi tipped off to boy suffering from rare genetic disorder

Tyler Huneault plays a mean air guitar. Last summer, while he watched the reality television contest Rock Star: Supernova with his parents, eight-year-old Tyler would hop to his feet during commercials and wail on an invisible six-string. After wrapping up a mini-concert, Tyler would turn to his parents, Ida and Perry Huneault.

“We were his judges,” said Mrs. Huneault.

Last night, Tyler, who suffers from a rare genetic disorder called Sialidosis, spent 40 minutes with a man who has also been known to put on some energetic performances — though none in the Huneaults’ living room. Lukas Rossi, a Canadian rock singer and the winner of Rock Star: Supernova, stopped by Tyler’s home before his solo acoustic concert at the Tila Tequila night club on Clarence Street.

“Lukas was pretty cool,” said Ms. Huneault, who was put in touch with the heavy-metal singer’s publicist by someone from, of all places, her church.

The Toronto-born rock singer played soccer with Tyler and met some of his friends. Tyler introduced Mr. Rossi to his pet bird and played video games with him on his Game Boy. In return, Mr. Rossi gave Tyler a special gift.

“He knew about my sickness and he gave me his rosary,” said Tyler. “Whenever I’m not feeling well, I can kiss it.”

Mr. Rossi is the lead singer of Rock Star Supernova, a band comprised of former members of Metallica, Motley Crue and Guns N’ Roses. He earned the position by winning the reality show after which the band is named, beating 14 other contestants hailing from the U.S., Canada, Australia, South Africa, Iceland and Puerto Rico. Mr. Rossi says more rock musicians should spend time focusing on others instead of themselves.

“Every musician in the world that has any power should use it for something good,” Mr. Rossi said in a telephone interview after leaving Tyler’s home. “The world would be a better place if we focused a little more on that.”

Tyler was diagnosed with Sialidosis, also known as Mucolipidosis, at age one. He lacks an enzyme that breaks down a particular molecule. As a result, these molecules accumulate in his cells and affect how they function.

The physical symptoms include stunted growth, a large, distended forehead, a broad, flat nose and swelling of the liver and spleen.

Tyler has the more severe form of the disease, known as Type II Sialidosis. It is extremely rare and he is believed to be the only person in Canada suffering from it.

Children who have it don’t usually live beyond their third birthday. At eight years old, Tyler has already exceeded his expected life span.

“He’s exceeded it by a mile,” said Suleiman Igdoura, a McMaster University biology professor who is researching the disease. “It’s a remarkable story, this kid. In my lab, we have his picture on the wall.”

There is no treatment for Sialidosis, although Tyler has received a bone marrow transplant Mr. Igdoura believes may have helped him. Mr. Igdoura’s research team is working on a gene therapy that will replace the defective gene in Sialidosis sufferers. They are close to completing a test of the therapy on animals, which Mr. Igdoura hopes will bring them nearer to a clinical trial.

Most children born with Sialidosis have, in addition to physical ailments, learning disabilities and problems with speech and hearing. Tyler, however, had developed well in these areas. He has suffered no mental deterioration and goes to a regular school.

“It’s atypical for a child to achieve what he has,” said Mr. Igdoura. “He’s beaten the odds in many ways.”

The Huneaults know their son is special. Ms. Huneault calls him their “little miracle.”

As for spending time with a multi-pierced, mascara-wearing rocker with a shock of blond hair, Tyler took it in stride.

“Tyler is somewhat of a little rebel himself,” said Ms. Huneault.

Source: The Ottawa Cizien http://www.canada.com/

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