Meet the supermums of Dubai
All their worlds were turned upside down when, years ago, they found out their children would have to cope with lifelong conditions - including almost-unheard-of diseases. But today, these mums are at the forefront of campaigning for determined children by advocating inclusion, raising awareness and giving hope to other parents on the same journey
Mum to Lynn, 11, who has 'Man on Fire' disease
What do you do when your child is diagnosed with what may be the only registered case of a really rare condition for miles around - or, in the case of Dubai-based Youmna Ghaziri's 11-year-old daughter Lynn, the only registered case in the Arab world? It's not for nothing that Lynn's condition of erythromelalgia (EM) is also called 'Man on Fire' disease - because burning alive is exactly what the pre-adolescent says it feels like when she experiences the same painful flares every day. During this time, the skin on her hands and feet turn severely red, and its temperature can go "up to 40-50°C", causing it to peel or crack. The chronic pain that accompanies these flares - which are triggered by pressure (such as holding a pen for too long) or movement (like walking) - is something that Lynn has been learning to cope with since the symptoms first manifested themselves three years ago, shortly after her eighth birthday.
The first year was the toughest, recalls her mum, a former agricultural engineer. "Lynn was younger then and couldn't understand what was happening. She'd be crying constantly and, because she was stressed out, the flares would take longer to go away." The youngster eventually learnt to coach herself through them. But, with no known cure, there's currently nothing to do, says Youmna, except avoid triggers and wait for the flares to pass when they occur.
Things are better these days, adds the 36-year-old mum-of-two, who homeschools her oldest now and no longer has to "talk her out of bed". That's because Lynn has found new purpose over the last year with the family's social media campaign called the Red Hand Challenge. Encouraging everyone to dip their hands in either red paint or ketchup to spread awareness, they've been "blown away" by the support they've received, which has proved a great motivator for Lynn as well.
The campaign motto - fighting rare disease with a smile - was Lynn's idea. It's something you can't help noticing even without knowing the slogan: the kid is almost always all smiles. Asked whether she has nature or nurture to thank for that, Youmna responds, "A bit of both. By nature, Lynn has always been bubbly and caring, but when she was suddenly struck by this condition - which has greatly limited her social life and activities - it depressed her."
The first six months, Youmna says, she couldn't talk to Lynn, without the latter bursting into tears. So, her mum threw herself into reading "all kinds of books" - including one on how to talk to kids with chronic challenges. "Chronic pain can rip you from everything you know. I had to remind her of who she is, and how she couldn't let her pain define her. Slowly, Lynn started finding her old self again. It's been the most powerful tool I've ever given her."
Guilt and fear are two subjects few mums of determined children are willing to address openly. Youmna doesn't hesitate to admit how she "automatically took the guilt train that mums are so quick to get on" in the days immediately after the diagnosis. "I felt so guilty for enjoying anything," she recalls. "If she couldn't have a bubble bath or wear closed shoes, neither would I. But I soon realised I was only destroying myself, instead of being an example of support and strength."
As for her fears, the fact that Lynn's condition is progressive is not one that she and her husband are unaware of. "Although we're trying to limit whatever pain she has now, we know one day we may not be able to stop things from progressing. Thinking that far ahead is only going to cripple us though, so we choose to stick with hope for a breakthrough someday."
In the meanwhile, the family lets Lynn test her limits. Because she "gets sick of living like a constant prisoner to her pain", Lynn occasionally opts to play sports or go to the mall, even though she knows it will trigger her flares. "Sometimes," Youmna reveals, "she says it's worth it. We give her the freedom to decide."
Mum to Rio, 15, who has 1q44 deletion de novo syndrome
Few people can say they haven't heard of Team Angel Wolf, a family of four who are familiar faces when it comes to advocating for the determined community in the UAE. Co-founder Delphine Watson is mum to Rio, 15, who has a rare chromosome disorder called 1q44 deletion de novo syndrome, which greatly affects his speech and motor skills and causes seizures and severe disabilities. But the foursome is best known for taking on numerous sporting challenges and racing adventures - Rio included! - to promote their message of fitness and inclusion. One of their most recent feats was to complete seven half Ironman distance triathlons in seven emirates in seven days.
The discovery of how passionate Rio is about these races drives them, and the teenager never fails to ground them when the going gets tough, notes mum-of-two Delphine. "The majority of us are blessed if we ever find our passion in life. Rio's is racing. We were doing nine-hour days recently and everyone was exhausted, but he was still giggling and smiling. You can see how much he loves what he's doing. He doesn't care about yesterday or tomorrow; he just lives in the 'now', and it reminds me to look for the positives when life gets stressful."
Her greatest goal at the moment is advocating inclusion. "Everyone talks about equality for genders and nationalities but, sometimes, people with intellectual disabilities get lost in that equality scheme. For me, it's about showing people what Rio can do, not what he can't."
If there's one thing that really comes through, it's the bond between Rio and his younger sister, Tia. That some kids struggle with accepting their determined siblings - especially as they grow older - is not uncommon. Delphine says that though she instructs and guides her daughter, Tia is "naturally protective" of her brother and pushes him to bring out the best of his abilities. She does not discount the huge impact that modelling inclusion has though. "Parents are role models, and seeing how they deal with situations becomes a model for how other children in the family react to things. [Husband] Nick and I go out of our way to include Rio in everything, so Tia has grown up seeing that as a way of life."
For those who "don't know" how to interact with people of determination, Delphine offers three tips. First, ask, instead of staring and making people uncomfortable. "It means the world to me when someone wants to say hello to Rio." Second, think about inclusion. "It's not always going to be easy to include a child with different needs in your activities, but there's always a way." Lastly, offer to help. "A lot of parents become full-time caregivers and don't have a marriage, which gets stressful," she says. "If parents are stressed or running on empty, it will affect the child. So, offer to help with a doctor's appointment or babysitting. It may be the kindest thing you can do for them."
Mum to Jad, who passed away last year, aged 11, and who inspired the special needs school, Jad's Inclusion
Rana Akkad's background was not in education. In fact, she used to be a fashion designer. As she puts it, she didn't even like school back in the day, so the irony of being the founder of her own school today is not lost on the friendly 37-year-old. But it's been quite the journey.
When her middle son was diagnosed with autism at the age of two - more than a decade ago - she took to blogging to relieve her emotions. The feedback, albeit mostly anonymous, was overwhelming and she soon found herself fundraising to help other families who couldn't afford therapy. The end of those programmes was supposed to signal new beginnings for the children, who then hoped to enrol in mainstream schools. Instead, Rana started receiving email after email of their rejections.
This hit close to home, as her own son, Jad, was rejected 22 times before a mainstream school accepted him. Jad fell into the grey area between kids who could thrive in mainstream schools and those with severe impairments. Inspired, Rana founded Modern Alternative Education to "bridge the divide" for kids like Jad. And, last year, when her son passed away unexpectedly in his sleep, she renamed the school Jad's Inclusion in honour of him.
The UAE has certainly advanced, but Rana says we're still "not quite there yet". It's not about the number of schools available, so much as it is the quality of such schools. Unfortunately, delivering the right quality automatically means the costs become quite high.
Today, Rana finds herself in the unique position of sitting on both sides of the table. "As a parent, I can see the costs are so ridiculous, they're unaffordable for half the community. But as a managing director, I can now see why it's impossible to reduce fees further without compromising on quality. If we had more good, licensed professionals out there, it would greatly help with the price structure," she feels.
If there's a word of advice she has for her peers, it's this: "Shelve your ego," she says, with startling candour. "I fought so hard to get Jad into a mainstream school, but he didn't fit there. He wasn't bullied, but he was smart enough to see when he was being left out and it depressed him. Inclusion doesn't necessarily mean they have to be part of a mainstream school," she says now in hindsight. "You just need to be included in the community. The goal is to help them be independent as adults, so it doesn't matter what path they take to get there. I realised I only wanted Jad in mainstream for my own ego. But we should go with what our kids need, not what we want them to have."
Mum to Ruby, 13, who has Down's Syndrome
Around the time that Ruby was born, her mum, Canadian expat Stephanie Hamilton, had her own jewellery business. Tests had revealed that there was a "10 per cent chance" Ruby would be born with Down's Syndrome and Stephanie recalls how, in her mind, she'd just interpreted those results as meaning they were in the clear. As it turned out, Ruby was born with the congenital disorder and Stephanie gave up her business, because she "couldn't handle both at the same time". For the first six years of Ruby's life, all Stephanie did was focus on her kids [she has a 17-year-old and a nine-year-old too] - but notes how a lot of time and energy went into ensuring Ruby was being treated fairly and had all she needed at school. Accepting Ruby's condition was no problem at all for the mum-of-three: it was people's "attitudes of assumption" that she couldn't always abide.
Stephanie tells of how Ruby was denied admission at 40 schools before being accepted into one. But what jarred was when people would write her off on the basis of the label [of Down's Syndrome]. "One person told me straightaway that they didn't have the facilities for 'people like that', without even meeting Ruby," she recalls. "The challenge was getting decision-makers or people in positions of power to even consider these kids for a placement. The label always brought up a wall of assumption."
Her experiences are what led her to create the photography series titled 'I am ME (Most Extraordinary)', in which she profiled the stories of several people of determination in Dubai in a bid to shed light on their challenges. "There are a lot of myths around this community, but categorisation is not helpful, because there's a person at the end of that label," she says.
Stephanie agrees that the UAE has changed a lot with the inclusive KHDA framework that was introduced in 2017. However, she believes more education is required because stereotypes continue to prevail - as well as a reluctance to give the community a chance. "Everyone has talents, and there's no reason why a person of determination shouldn't get a job in the area he or she is gifted in," she states.
Today, she continues to advocate for those with special needs, but also offers encouragement to their caregivers. An oft-cited report puts the rate of divorce among parents of autistic children at 80 per cent. Whether that is legend or truth, Stephanie says having a child with special needs can take an extra emotional toll on a marriage. "People say 'make time for date nights', but we've got to be realistic," she says. "My husband commutes to and from Abu Dhabi every day, so we catch up when he calls me during that commute. We have a mutual understanding that we'll get 'our time' back, but we know that our focus right now is Ruby. It's not a romantic answer, but it's the truth. Don't put pressure on yourself to live up to unrealistic expectations. Focus on being a loving family. That's all you can do for now."