00:00Kimya is 7 years old. She is always happy, very excited, very friendly, and very, very
00:12sociable. Nothing wrong with that, but doctors here tell us that she has a condition called
00:18Angelman Syndrome. Now what's Angelman Syndrome?
00:23The problem that they have on the chromosome 15 either deleted or is silent and affects
00:31them in different ways.
00:32The universal symptoms is a lack of speech, so communication is a problem. And so we just
00:38like people to understand that Kimya is very, very aware of everything that's going on around
00:44her and everything that people say. She struggles to speak, but she's actually a very good communicator
00:50with sign and the rest of it. And it's just she's sociable, she wants to reach out and
00:55be everybody's friend.
00:56As Kimya's parents point out, Angelman Syndrome is a very rare medical condition and not something
01:04most other kids, even adults in the UAE, are aware of. Kimya's mom Susie says she knows
01:11only four other cases like her daughter in the Emirates. But she is determined to raise
01:17greater awareness about the condition to mark Angelman Syndrome Day on February 15.
01:24Not just that, in a gesture that is sure to touch many hearts, Kimya, who has long, beautiful
01:30hair, generously agreed to donate 12 inches of her golden locks to make wigs for children
01:37with cancer.
01:39As her mother did the needful in an exclusive launch of the campaign at the express office,
01:44she watched in fascination the big smile never leaving her face.
01:56But Kimya is blessed to have a loving family and a circle of friends who are very supportive.
02:03As they point out, her smile and sense of cheer are almost infectious.
02:07The best thing about my sister is that she always has, she always creates a happy atmosphere
02:14and it's everyone around her.
02:15I like about Kimya that she's always happy and she giggles about everything.
02:19I like the best about Kimya that she plays with everyone and tries to make everybody smile.
02:27This is Sharmila Dal, Chief Reporter, Express.
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