Expo 2020 Dubai: A merry time for children with rare diseases

Children and people with rare diseases were honoured at Al Wasl Dome, the heart of Expo 2020 on the occasion of Rare Disease Day on Saturday.

The event was aimed at raising awareness and educating the public. The day is dedicated to give patients the opportunity to meet others living with rare diseases.

At the event people living with rare diseases and their families came together for a concert by Zeina Aftimos, followed by activities for children. Two mascots of the UAE rare disease society also entertained the children and the audience.

It was a moment of contentedness, bliss and joy as children as young as three years mingled with others suffering from rare diseases. Parents also shared their thoughts on their child’s disease.

Some parents who lost their children to rare diseases also attended the session. One among them was Zakia Khalifa Alreyami, an Emirati residing in Abu Dhabi. She and her husband found out that they were suffering from propionic acidemia disease about after giving birth to their third child. It is a rare metabolic disorder affecting one in 20,000 to one in 250,000 and is characterised by deficiency of propionyl-CoA carboxylase, an enzyme involved in the breakdown of the chemical building blocks of proteins.

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“Due to my medical condition, I lost nine children and six of them were miscarriages,” said Alreyami. “After my eighth pregnancy, the doctors discovered the reason behind death of my children and my ninth child, a daughter, survived for 16 years under medication,” added Alreyami.

She had hoped that her daughter would survive but passed away last year after spending most of her life at the hospital. “I have another three-year-old daughter and all thanks to almighty, she is doing fine,” said Alreyami.

She said that she met some wonderful people at awareness events who keep her spirits high.

Another mother present at the event was Fatima Sultana, an Indian expat residing in Sharjah. She is the mother of 14-year-old Halima Qadri, who is suffering from Niemann Pick rare Disease Type C, which has affected her mental and physical abilities to a child of three years old.

Out of Fatima’s five children, two suffer from this disease. Her first daughter passed away two years ago due to cardiac arrest. “My first daughter Hafsa was in ninth standard when we found out the problem and Syed Ahmed, my son was in eighth standard.”

Ahmed is now under ventilator treatment and is admitted to the hospital for the last three years. “His lungs aren’t functioning and is monitored continuously by the doctors,” said Fatima.

Halima, the third child, wants to do a lot of things in her life but has restricted physical and mental abilities. “She can do a lot of things by herself like eating etc. But she needs help in going to washroom.”

The couple discovered that they are the carriers of Niemann pick type C which has affected their three children. They discovered it after overlooking the condition of their son Ahmed.

Fatima’s husband Syed Abdullah Qadri is an accountant and is residing in Sharjah. The couple hail from the South Indian city of Hyderabad. Their third child is memorising Quran and the last child Yousef is studying at a private school.

Fatima is not disheartened at all and is happy and thankful to almighty for blessing her with two healthy and intelligent children.

ayaz@khaleejtimes.com

• Dubai