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Carols to help four-year-old with rare disease

Dhanusha Gokulan (Principal Correspondent)/Dubai
dhanusha@khaleejtimes.com Filed on November 23, 2019 | Last updated on November 23, 2019 at 06.55 am

(Supplied)

Since 2010, Jingles has raised thousands of dirhams for kids with serious illnesses.

A Dubai-based community group named Jingles is all set to sing Christmas carols to raise money for four critically-ill children, including Mohammed Hamza, a four-year-old with Atypical Hemolytic Uremic Syndrome (aHUS).

The other kids are Egyptian nationals Layan Elsayed, 3, and Basmala Sameh, 7, and Filipina Xander John, 2. All the three children have been diagnosed with leukaemia. A 28-year-old Filipina Jasmine, who suffers from Non-Hodgkin's Lymphoma, will also receive financial aid from the group.

While Jingles has been able to help with funding for treatment of all previous patients, this is the second time the group is launching a support initiative for Hamza.

Jingles, a collective of nearly 75 children and adults, was founded by Indian entrepreneur Rajiv David and wife Jessica David. The group is associated with the Emirates Red Crescent.

The charity identifies children who require financial help to avail of treatment for their illnesses with the backing from their in-house medical team and the Dubai Health Authority. The group also has a permit from the Islamic Affairs and Charitable Activities Department (IACAD) to raise funds for this purpose.

Since 2010, Jingles has raised thousands of dirhams for kids with serious illnesses. In 2016, the group raised Dh426,000 that went towards the treatment of three critically ill kids.

Ayesha Ibrahim, the head of awareness unit at Emirates Red Crescent, told Khaleej Times: "My association with Jingles began in 2016, where we identified four children with leukaemia and the group was able to raise money for their treatment. This year, we have identified a total of four children that Jingles will raise money for."

Jingles goes carolling once every two years to help raise funds for children suffering from critical diseases.

Sunil Pinto, a Dubai-based IT professional and carol singer, said: "We have grown considerably in numbers since our launch in 2010, when we started with just 20 singers. We dedicate two months towards practice." The group practices every Friday and will officially begin carolling on November 29, said Pinto.

Another singer, 17-year-old Vanessa D'Souza who is a student of Indian High School, said, "I joined Jingles two years ago as my parents are both part of the initiative. Our initiative gives children a chance at survival. Personally, it gives me the satisfaction that I've helped someone."

Freelance content writer Pamela Dias said: "I was introduced to Jingles through a common friend. Both my husband and I are carol singers. I feel this is an immense opportunity to give something back to the community."

dhanusha@khaleejtimes.com

 

'There are only 15 aHUS patients in UAE'

Indian national Mohammed Hamza suffers from aHUS, an extremely rare and life-threatening disease. "There are about 15 diagnosed and treated cases of aHUS all over the UAE, pointed out Hamza's doctor, Loai Akram Eid, head of paediatric nephrology department at the Dubai Hospital.

Hamza was diagnosed with the progressive disease in October 2016 when he was over a year old and has had two relapses since. Hamza's father, Mohammed Azeem, said: "We tried other branches of medicine, even in India. But nothing has helped."

Hamza's family struggles

Hamza's mom Mubeena said: "Due to our financial condition, in August this year, we extended the timeline for giving Hamza the medication. He relapsed on August 30, after which he was admitted into an emergency section of Dubai Hospital for 13 days. Since the last relapse, doctors have said he has to take medicine once every four weeks."

Hamza's insurance covers the treatment costs for only six months in a year. "We reach the maximum limit for insurance in six months. The rest of the year, we need to pay, and it is not affordable," explained Azeem. While there is no nationwide support system to assist patients with aHUS, helps comes from different charities, according to Dr Akram.

Hamza's parents have also appealed the various health authorities to include him in government-funded treatment programmes such as 'Aounak', Abu Dhabi's innovative and mandatory health insurance scheme, or support from the Dubai Health Authority.

"The support for Hamza has to be sustainable. We have considered moving to Abu Dhabi to avail the treatment. At this point, we cannot afford that, and I fear quitting my job and losing the insurance I already have. My humble request to the authorities is to enrol Hamza for lifetime treatment support into any ongoing medical support programmes anywhere in the UAE," said Azeem.

Organisations such as the Emirates Red Crescent (ERC) has played a huge role in supporting families like Hamza's. However, according to Ayesha Ibrahim from the ERC, the charity can only support a family to a maximum limit of Dh30,000 per year per patient.

"That is why we need community support from groups such as Jingles. I would encourage more communities and individuals to come forward and provide support. When a child is in such a situation, very few families can afford expensive treatment, especially without insurance," said Ibrahim.

dhanusha@khaleejtimes.com

author

Dhanusha Gokulan

Originally from India, Dhanusha Gokulan has been working as a journalist for 10 years. She has a keen interest in writing about issues that plague the common person, and will never turn down a human interest story. She completed her Bachelor in Arts in Journalism, Economics, and English Literature from Mangalore University in 2008. In her spare time, she dabbles with some singing/songwriting, loves travelling, and Audible is her favourite mobile application. Tweet at her @wordjunkie88


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