DUBAI // A new charity set up in the name of a young girl who lost her life to a rare form of cancer aims to offer comfort and support to children with the disease.
What was thought to be a simple ear infection turned out to be something far more sinister for Dania Alami. The schoolgirl had rhabdomyosarcoma diagnosed, a cancer of the connective tissue, in April 2008.
A little over two years later the cancer had claimed her life, a week before her 13th birthday.
Dania's legacy is a new charity in her name, Omniyat Dania, that will work in partnership with the Al Jalila Foundation in Dubai. Omniyat means "wishes" in Arabic.
The charity officially launched on World Cancer Day, on Wednesday, from the Paediatric Oncology Department of Dubai Hospital, and has already raised Dh46,000.
Dania's mother, Dana Al Askari, hopes that by telling her daughter's story, it will help to lift the taboo she said is still associated with cancer.
"Dania first had a very rare paediatric cancer in the nasal pharynx. It was extremely rare," she said. "It started as an ear ache and she was seen by a paediatrician, an ear, nose and throat specialist, and then a dentist."
At first doctors thought an abnormality in tests might have been an adenoid or cyst. It was only when tests were conducted by a specialist in London that her family's worst fears became a reality and they discovered that Dania had cancer.
"It was very hard to deal with," Mrs Al Askari said. "I was super focused. It took its toll on the whole family dynamic.
"I was very strong for Dania but that strength only came from her courage. She never complained about the treatment and injections she needed. She was a strong girl but also sweet, witty and fun. Dania was serene, an old soul in a young body. Her cancer made her even stronger."
Mrs Al Askari was also keen to stress the need for greater understanding of cancer in the region.
"Cancer is still a taboo subject here. It is not spoken about and there needs to be more education to get people talking," she said.
It has been a difficult time for the Jordanian family, who live in The Lakes, particularly for Dania's older brother Ali, 20, who donated bone marrow, and younger brother Badr, 8.
Their father, Hasan Alami, hopes the charity will help put smiles back on the faces of other children living with cancer.
"Parents will be shocked by the news their child has cancer, then overwhelmed with the information they are given," he said.
"There are a lot of decisions to be made when a child gets a disease like this - the whole family has to be involved.
"It is hard to know how to deal with children and keep a smile on their face. We want the charity to offer them support and comfort for their families."
Omniyat Dania will welcome volunteers to make hospital visits to children to cheer them up and also, crucially, raise money to fund further medical research.
Dr Abdulkareem Al Olama, the chief executive of Al Jalila Foundation, said: "Particularly for our children and our children's children, medical research is essential in the sustainable development of health care in the UAE.
"Through the Omniyat Dania campaign, Mr and Mrs Alami bring joy to suffering children while also benefiting future generations of children. We are humbled and grateful for their active involvement in making medical research in the UAE a reality."
Children such as Steve Kuriyan, 9, who is recovering from a brain tumour, are an example of who will benefit. He has been receiving treatment at Dubai Hospital's paediatric unit but has returned home to Al Quoz, with his father Mathew, mother Molcy, sister Sharon, 15, and brother Sam, 12.
Mr Kuriyan, an engineer, said: "We have been suffering personally, but it is good to share experiences with other families.
"It is good to show others how far Steve has come and how well he is doing."
Donations can be made at justgiving.com/omniyatdania to support Al Jalila Foundation's efforts.
nwebster@thenational.ae
