Tribute to teen turns spotlight on rare diseases
Joshua Hellmann was a teenager who made friends easily, had a positive disposition and liked to quote lines from Austin Powers movies. His favourite: 'Do you think I'm horny, baby?'
He died a year ago following his 10th stroke, just six days after his 15th birthday. He suffered from a rare mitochondrial disease called Melas Syndrome, a condition that can cause mental retardation, blindness, deafness, dementia and premature death. The average age of death is 15 years and three months.
Now his mother, Christina Hellmann-Ipsaryaris, along with experts, Joshua's friends and a celebrity ambassador, is creating a foundation, Joshua Hellman Foundation for Orphan Disease, in her son's memory.
The foundation will help children who suffer from rare 'orphan' diseases - ignored by pharmaceutical companies because of the low numbers of sufferers and less well known in the medical community.
In Hong Kong, orphan diseases are estimated to affect 20,000 to 30,000 children and adults. There are about 500 well-documented types of diseases, which affect one in 10,000 to one in 20,000 in the local population.
'There is a lack of diagnostic centres for these diseases in Hong Kong,' Ms Hellmann said. 'We're hoping, through the money raised, to raise awareness, educate medical staff and provide support therapy' as well as to help cover the costs of diagnoses for families who need financial help.
'We would also like to fund a laboratory at Queen Mary Hospital. For a general diagnosis here the cost is HK$3000; for a more comprehensive one it is between HK$6,000 and HK$8,000. That's what we are hoping to facilitate.'
Ms Hellmann is organising a press conference on Tuesday at the China Club as well as a fundraising evening at Gaia in Central on Wednesday - the anniversary of Joshua's birthday. Actor Michael Wong has agreed to be the foundation's ambassador. His wife, Janet Ma, will show couture clothes and jewellery at the sold-out event, which also includes an auction.
Ms Hellmann is also bringing in a Japanese expert on Melas Syndrome, Professor Yasutoshi Kogawho, who will speak, along with Ms Hellmann, at a symposium at the Hospital Authority in Argyle Street, Kowloon, on Tuesday evening.
Daniel Hanemann, 15, was Joshua's best friend. 'We hung out a lot at the German Swiss International School and I used to go to his home.'
After Josh lost his eyesight overnight from a stroke, the pair would play computer games, with Daniel operating the controls while Josh called out when he heard a monster moving. Josh also played Monopoly - from memory.
'We talked about school, the teachers, the girls Josh liked,' Daniel said. 'He also had a major crush on Avril Lavigne. I think Josh would have been very pleased with the foundation and the idea that his name could help other children.'
For more information, email info@JHForphandisease.org