Meet Kimia, the girl who is always happy
FAMILY LAUNCHES ‘GRATITUDE STONE’ CAMPAIGN TO STRESS INCLUSION
An extremely popular student, she has a wide circle of friends
Kimia Mackay is a grade 3 student at Aquila School in The Villa in Dubai. An extremely popular student, she has a wide circle of friends. No surprises there, you might think, as she has a happy face with an infectious smile.
But talk to her and she won’t reply. She is vocal alright, but she is non-verbal. She is earnest and effusive, but expression as the world knows it eludes her.
As her mother Souzie Mackay explains, Kimia is a “happy baby”, suffering from a rare genetic disorder called the Happy Puppet Syndrome. Also called the Angelman Syndrome, it is a chromosome defect that causes acute learning difficulties besides issues with speech, movement and coordination.
But on the occasion of International Angelman’s Day on February 15, the Mackays weren’t complaining of lack of awareness about their daughter’s disorder. Rather, they have been celebrating the baby steps she has been able to take in her school.
Last February, the family launched a campaign where Kimia donated her thick golden locks to charity just so that people become aware of Angelman Syndrome — Souzie said she knew only four other cases like Kimia in the UAE. But this time around, the focus is on inclusion and how it makes a difference.
As part of the new ‘Gratitude Stones’ campaign, students of the school were given small rocks to register their sense of gratitude. Souzie said, “It had a two-fold purpose: one, to show that every rock is different, but it’s still a solid rock; and two, you could write something close to your heart on the rock and feel grateful for it. In other words, each one of us is unique, but underneath it made up of the same stuff. Just like the gratitude stones.”
The students wrote many things on the stone, with one even “love for Kimia”, which deeply touched the Mackays. “Kimia loves putting a smile on other’s faces and is so kind,” said another student.
Door to friendship
“Our child of determination is at last part of a community and establishing meaningful relationships with students and teachers alike. She is no longer just a tick on a register. We hope we will enable all our children to open a door to friendship, to better understand the differing challenges each of us must face, and progress toward a happy and fulfilling life. We are grateful for finding a truly wonderful form teacher in Julie Hoyland,” said Souzie.
“It’s really important that we have an environment of inclusivity in the school,” said Hoyland, pointing to how the students at Aquila had learnt a lot from Kimia, how to deal with people of determination like her, besides communicating with different types of people, including those who cannot speak.
She said, “Kimia too gets to learn a lot from her peers and how to socialise with them. She’s made so many new genuine friends and children just love spending time with her.”
Kimia’s dad John Mackay said they realised Kimia, their second child, was slow when she was one. “When doctors diagnosed her with AS, it was a crushing discovery for us. But now, we feel so differently. We understand kids with AS are special with needs and feelings like other children,” he said.
Our child of determination is at last part of a community and establishing meaningful relationships with students and teachers alike. She is not just a tick on a register.” Souzie Mackay | Kimia’s mother
It’s important that we have an environment of inclusivity in school. Kimia too gets to learn a lot from her peers ... She’s made so many friends and children love spending time with her.” Julie Hoyland | KImia’s teacher