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Dubai resident runs 50km to raise awareness about rare diseases
Last year, the expat ran 560km in 7 days for Palestine on Kite Beach; he also once played tennis for 36 hours to raise money for a little girl who needed an operation in the US
- PUBLISHED: Sat 1 Mar 2025, 2:24 PM
- By:
- Waheed Abbas
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Dubai resident Stephen Melia, on Friday, ran 50km to raise awareness about rare diseases.
“I've done a lot of work with kids of determination over the years in the UK and here in the UAE. I always feel an obligation to give back and do what I can. I ran from 9am till 5pm for over 50 kilometres to raise awareness,” said Melia, who is a British national.
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Melia has already taken part in several initiatives to raise funds and awareness for different purposes.
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In November 2024, Melia successfully ran 560km in seven days for Palestine on Kite Beach. He has also played tennis for 36 hours to raise money for a little girl who needed an operation in the US.
“I'm always doing something for someone. This run is purely just to raise awareness because I don't think many of us really know about rare diseases.”
Rare Disease Day is marked on February 28 every year and February 29 in a leap year. Around 300 million people are suffering from over 6,000 rare diseases globally.
“We have very few treatments for rare diseases. I think five per cent of rare diseases have known treatments. I don't think it's spoken about enough; that's why I'm here today to raise awareness,” he added.
A resident of Dubai for 8 years, Melia hopes this initiative, in partnership with High Hopes Pediatric Therapy Centre, Dubai, will be on a bigger scale next year.
“If you're going to raise awareness, you probably have to do something a little bit bigger or a bit unusual. You do something normal; it might not gain any public attention.”
He added that since UAE is marking 2025 as a “Year of Community”, he wants to do something more to bring communities and people together.
“We need people like him in the community to raise awareness. That's why we recommended him to come in and do this run. It's a lovely initiative from him,” said Aida Barghout, general manager of High Hopes Pediatric Therapy Center.
“There are 300 million people worldwide who are affected with rare diseases. We have a lot of kids that come in the centre that have rare diseases. So we're trying to raise awareness, educate people, and make it like a nice memory for them," she said.
“Sometimes we have people here that connect with each other whose kids suffer from a rare disease. When they find the same rare disease in others, they learn from each other. Some of the diseases don't have treatment,” she said, adding that kids are offered physical, occupational, speech and language, feeding and behavioural therapies.
Dubai resident Samar Zananiri’s 18-month-old son Thao suffered from a rare disease neonatal epilepsy due to a genetic mutation, causing him epileptic seizures when he was two years old. He is currently undergoing treatment at High Hopes Pediatric Therapy Centre.
“Once Thao reached four months old, I noticed that he was not doing the developmental milestones that he was supposed to be. So, I rushed him to many doctors. I was not getting the actual result that I wanted because my son was still not thriving, as I wanted him to be. So we reached High Hopes through a friend whose daughter is also coming here, and it has been life-changing,” said Zananiri, who has been a Dubai resident for 13 years.
She brings her son for treatment to High Hopes five times a week for six sessions under different therapies including physio, speech, feeding and occupational.
Zananiri praised the UAE government's support and initiatives for people of determination. She said that after the treatment that he received in Dubai, he has been epilepsy and medication-free for the past four months.
She also stressed the necessity of early medical intervention.
