The Dubai inhabitant runs 50 km to rarely sensitize

On Friday, the resident of Dubai, Stephen Melia, ran 50 km to rarely sensitize.

“I have done a lot of work with children of determining over the years in the UK and here in the United Arab Emirates. I always feel an obligation to give back and do my best. I ran from 9:00 to 17:00 for over 50 kilometers to sensitize, “said Melia, who is a British national.

Melia has already participated in several initiatives to raise funds and awareness for different purposes.

Be up to date with the latest news. Follow KT on WhatsApp channels.

In November 2024, Melia successfully ran 560 km in seven days for Palestine on Kite Beach. He also played tennis for 36 hours to raise money for a little girl who needed a US operation.

“I always do something for someone. This running is just to sensitize, because I don’t think many of us really know about rare diseases. “

The day of the rare disease is marked on February 28 every year and on February 29 in a leap year. About 300 million people suffer from over 6,000 rare diseases globally.

“We have very few treatments for rare diseases. I think five percent of rare diseases have known treatments. I do not think it talks about enough; That’s why I’m here today to raise awareness, ”he added.

A resident in Dubai for 8 years, Melia hopes that this initiative, in partnership with High Hopes Center for Pediatric Therapy, Dubai, will be on a larger scale next year.

“If you sensitize, you probably have to do something a little bigger or slightly unusual. You do something normal; They could not get public attention. “

He added that, since the United Arab Emirates marks 2025 as “year of community”, he wants to do something more to bring communities and people.

“We need people like him in the community to raise awareness. Therefore, I recommended to enter and do this running. It is a wonderful initiative on his part, ”said Aida Barghout, general manager of the High Hope Pediatric Therapy Center.

“There are 300 million people around the world who are affected by rare diseases. We have a lot of children coming to the center who have rare diseases. So we try to increase awareness, educate people and do it as a pleasant memory for them, ”she said.

“Sometimes we have people here who connect with each other whose children suffer from a rare disease. When I find the same rare illness in others, they learn from each other. Some of the diseases do not have treatment, “she said, adding that children are offered physical, professional, speech and language, feeding and behavior.

The son of Thao, 18 months old by Samar Zananiri, 18 months old, suffered from a neonatal epilepsy of the rare disease due to a genetic mutation, causing epileptic seizures when he was two years old. It is currently undergoing treatment at a high hope of pediatric therapy.

“Once Thao turned four months old, I noticed that he does not make the development stages he had to be. So, I rushed to many doctors. I did not get the real result that I wanted, because my son still did not prosper, as I wanted to be. So I came to high hopes through a friend whose daughter comes here and it was a change of life ”, said Zananiri, who was a resident from Dubai 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 support and initiatives of the Government in the united emirates for people of determination. She said that, after the treatment she received in Dubai, he was epilepsy and without drugs in the last four months.

She also emphasized the need for early medical intervention.