HAS THE HEART OF A LION
Nine-year-old Australian Leo Lagana is one of just a few dozen people in the world with primordial dwarfism, the rarest form of dwarfism in the world. Understandably, this makes it difficult for the boy to meet people just like him, but an upcoming trip to the United States will enable him to do just that.
Leo is only 80cm tall and lives in Kanahooka, Australia, with his parents Pauline and John. He is the youngest of three children. Read Leo's Profile HERE.
KidzWish Foundation, which is based at Jamberoo, announced it would fund a trip for Leo and his parents to The Little People of America National Conference in New York in early July, 2009. The conference invites children and adults from across the world who suffer from dwarfism.
At the launch of KidzWish Foundation's 2009 Love and Laughter program, Leo and his family received their tickets for the trip, plus one extra treat.
Mickey Mouse joined Leo on stage at WIN Entertainment Centre to tell the lad he would be making a detour on his way to New York - to Disneyland in California. (Photo above: KidzWish Ambassadors Mat Campbell and Mick Lowe with Leo at the Love and Laughter Program Launch.)
The Disney side-trip came as a surprise to the entire family and Pauline Lagana said she was overwhelmed by the gesture. "They snuck that one on me. They are such a warm foundation and I hope this comes back to them ten-fold so they can do this for other kids."
The youngster said he was extremely excited about going overseas and meeting new people. “I’m looking forward to Disneyland, because Mickey Mouse will be there,” he said. “It’s going to be fun to meet new people … I’ll find a girlfriend too. I can’t wait.”
Pauline said Leo could now meet other special children “just like him”, as well as his parents being able to learn more about their son’s disability and build support networks of their own. “It will be good for him to meet people and what we’ll get from it will be invaluable,” she said.
Leo's mum has already chatted over the internet with a number of families who would be attending the New York conference, but said she was looking forward to meeting them in person. "It will be great. We'll get to meet another 50 people like Leo - mostly from America but also from Germany, Italy and New Zealand," she said. "It will help Leo to forge friendships, not so much for now but later, in his teenage years. It will help us find out how other people deal with day-to-day problems."
She said that although some with primordial dwarfism could reach heights of between 100cm and 130cm, doctors believed that Leo had already gone through a form of “early puberty” and may not grow much taller. Leo attends Dapto Public School, although he is unable to eat unassisted and often experiences headaches and fatigue after walking long distances.
UPDATE: Camera Crew Captures Little Leo's Big Apple Adventure
Little Leo Lagana's latest adventure became a small-screen epic, airing on current affairs program 60 Minutes. A camera crew followed the well-known Kanahooka nine-year-old as he joined 3000 members and their families for The Little People of America's 2009 national conference in New York.
Leo's first stop was DisneyLand in Los Angeles, where he got the chance to have a character breakfast with the Disney Characters including his favourite Mickey Mouse.
The cameras were rolling as Leo encountered a roomful of similarly short-statured folk, including 12 others with primordial dwarfism.
"He loved it," Leo's mum, Pauline Lagana, said. "He was surprisingly at home with them, like he'd known them forever."
Individuals with primordial dwarfism have a smaller body size but with organs and bones in the usual proportions. It is rare for those with the condition to live beyond the age of 30. About 100 people are thought to be affected worldwide.
The Laganas cherished the opportunity to speak to those who could give the best insight into what the future holds for Leo.
"We sat down with some of the older ones and they told us about their life experience now that they're out of high school, looking for a job in the real world - all the things we'll face in the future," Mrs Lagana said. "They also told us what to look out for, medically."
Contributed by Diane who lives in Queensland, Australia