By Kimberley Cummins
Darrion Layne is just four years old but already breaking glass ceilings. Like any typical preschooler his age, Darrion is very active. To the point that he has earned the nickname Taz, short for the Tasmanian devil from Looney Toons.
“There is no in-between with him. From the moment he wakes up it’s go, go, go,” his proud father Damion Layne shared. “He enjoys mostly loud sensory play, especially banging his light up drum kit.
He likes attending indoor, interactive amusement soft play centres, he also gets a thrill from any water activities whether it be splashing in the bathtub or jumping in muddy puddles.
Going to the park is another favourite activity of his, as he can spend hours just on the slide,” Damion added.
The only difference between Darrion and some other fouryear-olds is that he has a “super power”- Down Syndrome.
Down syndrome is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21.
But his parents, Damion and Donna, have never allowed this uniqueness to be a limitation because their hope is that when Darrion grows older, he will be able to live as independently as possible. So, it is no surprise that this youngster has a fledging career as a model, modelling for major brands in England, is a social media influencer with a growing following and is on his way to breaking down more barriers.
Darrion was born in England on the January 10, 2018, two weeks early via an emergency C section. His Down Syndrome diagnosis was made a few minutes after birth. It is common for parents of babies with Down syndrome to experience shock, fear and even sadness over the unknowns of raising a child who has intellectual and developmental disabilities.
However, the Laynes’ panic didn’t end there. In fact, Damion, a Barbadian immigrant formerly of Water Street, Christ Church, recalled that the panic was doubled when doctors identified that Darrion had a serious health problem.
“Within 24 hours, we were then informed that he had a heart defect which consisted of two holes affecting the valves that controlled the blood flow in his heart and would require openheart surgery,” Damion recounted during an interview with Barbados TODAY.
This procedure, otherwise known as an atrioventricular septal defect (AVSD) repair, is carried out to close holes in the heart that cause too much blood flow and pressure. The surgery fixes the heart valves as well, to prevent the added pressure from causing lung damage. Damion added: “Mum cried for a week and went through what seemed like a grieving process and had so many negative thoughts.
Such as, he may never have a wife, kids, a career, reach milestones or go to a mainstream school like his siblings, the list was endless. While I on the other hand was at the complete acceptance stage looking past Darrion’s diagnosis and excited for the opportunity to raise my first child.”
With minimal knowledge about Down Syndrome, the couple fastened their seatbelt and decided that they would take active steps to ensure that Darrion had access to the same opportunities as his peers with regards to education, employment, social activities and with the correct support in place would be able to achieve his wants and wishes.
This began with the decision that they would not do anything different with Darrion, that they had not done with his older half-brothers, including joining a support group for families with children with Down Syndrome. Initially, they thought that a group might provide them with a platform for making excuses for Darrion not achieving milestones or doing as well as his peers but their minds quickly changed when they were introduced to Wouldn’t Change A Thing (WCAT) charity.
For them, WCAT is a fantastic support group as it has many platforms where new and exceptant parents can ask questions, refer to guides and access recourses. As well as, get involved with campaigns such as this year’s #InclusionMeans campaign and many others for raising awareness and changing perspectives.
With the additional support they realised that not even was the sky the limit for Darrion. So that when around 2020 and Donna posted a few photos of Darrion on Facebook and the possibility that he could help redefine the negative and/or false public perception of people with down syndrome through modelling arose, they were all for it.
“There was one comment stating how cute he was [and] he should be a model. Mum replied ‘thank you’ and soon received a direct message from the person explaining that she also has a child with down syndrome and there is a model agency specifically for children and adults with disabilities and unique appearances.
After a brief discussion we contacted the agency and since then Darrion has been rocking his extra chromosome in the modelling world for the past 2 years. Working with companies featured in national and international campaigns such as River Island, Mothercare, Primark, Missguided and Claude & Co. to name a few, all made possible by the agency Zebedee who are great advocates for diversity and inclusion,” Damion said.
This is why for the Laynes this year’s World Down Syndrome Day theme #InclusionMeans is especially important, not just for Darrion but anyone with disabilities or additional needs, as views are often influenced by what is projected in the public.
Darrion attends speech and language therapy sessions but he is mostly non-verbal and mainly communicates through pointing, nodding ‘yes’ and shaking ‘no’. Despite this, his understanding and memory are good as he knows his Alphabet and counts from 1 to 20, acts out many nursery rhyme dances and can take on broad commands and carry out instructions.
While they are not sure what awaits Darrion in the future, they are certain that one less obstacle will be any limitation they place or allow society to place on him.
Damion noted: “We have learnt that while it may take Darrion a little longer than his peers, he is reaching all his milestones in his own time and teaching us not to stress the little things in life along the way. And that while we were guilty of constantly trying to teach Darrion how to interact or behave with others when we are out or at school etc., we should also be expecting that others without disabilities are taught how to interact or behave with Darrion or anyone else with disabilities, after all its a two-way thing. Their message to other parents and the general public at large was just be kind and teach your kids well.
“Don’t feel sorry for Darrion or us, we have the cutest, kind, loving and caring little boy who lights up a room with his smile and who happens to have down syndrome so may require your understanding at times not your judgment or sympathy.
“Darrion changed our family for the better and perspectives of all who know him. As his Instagram handle says, it’s all about the ups not the downs. “I Have Down Syndrome, What’s Your Superpower?”