Dubai: Families with cases of Angelman Syndrome (AS) in the UAE have called for greater understanding of the rare genetic condition which makes their children appear happy all the time, when in fact they could face isolation, acute learning difficulties besides issues with speech, movement and coordination.
Speaking to Gulf News ahead of the International Angelman Syndrome Day observed on February 15, Souzie Mackay, mother of Kimia Mackay, a Year 4 student of the Aquila School in Dubai, said, “We call on the community to empathise and understand our kids who are not always treated well when they are out and about. There is a tendency to get scared of these kids, so our message this Angelman Syndrome Day is to tell people that they are just like other children, so please embrace them like any other.”
‘Be their cheerleader, watch them win’
Souzie, who first launched a campaign to raise awareness about AS in February 2019, “From the four cases that I knew at the time, nine such families in the UAE have come together now. Each of the AS children faces a different kind of challenge."
Marwa, mother of Hana, a seven year old who has AS, said, "With every challenge comes a light to conquer it. Yes, I have an AS daughter, but she herself is our rainbow to conquer. AS kids are nonverbal, but are born with a natural irresistible love to connect, socialise, spread heartfelt smiles wherever they go. Our kids are full of surprises, the moment you feel you are giving up, they just show you a new acquired skill or move or gesture that keeps feeding your journey. They are constantly improving, at all ages. Be their cheerleader, and watch them win.”
Marwa said, “I wish inclusion in Dubai is yet more strengthened through adapting school curriculums to address the different needs of our kids. I wish teachers on board get trained on these adaptations and have them ready in class for our children. I wish the whole community - not only government - encourages inclusion: school management, parents, classmates, everyone out there. Inclusion changes lives.”
Hiba, mother of a two year old AS son in Abu Dhabi, said, “I would like to see a focused education system for our angels with the prices of the (special ) centres being governed. They charge a lot for evaluation, physiotherapy, speech therapies and occupational therapy.”
Yes, I have an AS daughter, but she herself is our rainbow to conquer. AS kids are nonverbal, but are born with a natural irresistible love to connect, socialise, spread heartfelt smiles wherever they go. They are constantly improving, at all ages. Be their cheerleader, and watch them winning.
Talking of the challenges involved in diagnosis of an AS child, she said, “It’s like ordering something and it reaches you without a manual... you can’t tell how to handle it and everyone around you is also guessing and trying the normal procedure thinking it will work. Then you figure it out yourself after passing through a tough time … You will feel very weak and hopeless sometimes. But your angel will take you out of it, using unexpected moments and acts and you will be surprised to see such potential coming out from them. They will teach you how to fight and how to become strong.”
‘Say hello, don’t stare at our angels’
Rachel, whose AS daughter Leah, turns 21 next month, said, “We want to educate people to smile and say hello, not stare at our angels – they are innocent. They just need support structures through school and beyond. An AS child brings unconditional love and joy to all those who care for them.”
Dubai-based Emily, whose son Sam, 4, is also diagnosed with AS, said, “April 6, 2017 was our D(iagnosis) Day, when we were told that our gorgeous son Sam has AS. He was almost two. For a few months, life turned upside down as we all came to terms with what that meant for him and for us. I started to raise awareness of Sam and AS via social media and since that date, his story has reached lots and lots of people, mums, families and children. Strangers in the mall recognise him thanks to my posts and come to say hello. Sam smiles at everyone and he touches them, both literally and figuratively. He reaches out for faces, for hugs and he flaps his arms when he is very excited. He does not speak but that does not mean he does not communicate. Far from it.”
“I would like to see increased awareness campaigns so that the public are far more patient and understanding of what our families face on a daily basis; increased penalties for people who park in the parking spaces reserved for people of determination; the installation of more priority checkouts at all supermarkets and the availability of more Caroline’s Carts as these are so useful when we do our shopping; more support for inclusion in general, affordable therapies and centres for people of determination,” she added.
Hair donation for cancer patients
Kimia Mackay won many hearts on February 13 when she donated her golden locks to cancer patients at a function held at the Aquila School where she is a Grade 4 student.
“Like two years ago, she made this wonderful contribution this year too. The idea was to show how they can improve the quality of life for individuals where there is a need. Kimia is non-verbal and this frequently elicits a disturbed response from those she encounters. But word of this worthwhile act will spread in many other ways beyond voice and serve as a useful reminder that we all use a variety of forms to communicate,” said Souzie Mackay, Kimia’s mum, adding that the absence of a voice does not mean there is nothing worth learning from a speechless individual.
She said with help from Heroes of Hope, a free sports initiative for people of determination, and Sands Fitness, the AS families are celebrating International Angelman Syndrome with a host of activities on Saturday.
Connecting with AS families
Those looking to connect with AS families in the UAE can contact Souzie Mackay at firstname.lastname@example.org