• The condition is named after Victorian British doctor, John Langdon Haydon Down, who wrote about it in great length during the 1860s and set up a private home for those with intellectual and development difficulties.
• According to the New Zealand Down Syndrome Association, around one in a thousand Kiwi kids are born with Down syndrome—one or more a week—and though it cannot be cured, “problems can be eased” if those with it receive the right help and “people have a positive, accepting attitude”.
• Down syndrome occurs at random, caused by an extra copy of chromosome 21 in the body’s cells. It’s classed as a congenital disorder.
• Down syndrome is never the result of any action—or lack of—during pregnancy. However, women who choose to have children later in life (after 35) increase their risk of having a baby with such a chromosome disorder.
• Down syndrome is not contagious.
• The severity of the condition does vary, but there is no reason why many people with Down syndrome cannot contribute to society.
It must have felt like history repeating itself for Tony Sykes while trying to secure work for his 22-year-old daughter, Emma, with his late wife having previously struggled to secure a preschool for their daughter, who has Down syndrome. Though the doting dad understands potential employers’ apprehensions about employing Emma, what most disappointed him was that most didn’t even acknowledge the applications. So, Tony decided to set her up with her own candlemaking business, called Downlights, established under the guidance of luxury Kiwi candle company Illumina.
“Tony would often light fragranced candles when cooking or having a barbecue in the yard, and Emma would always say ‘fire’ when they were lit, she was mesmerised by them,” says Illumina founder Jennifer Del Bel. “Also, whenever they went into shops, Emma would stop to smell the candles, quite a typical girly thing, really.”
From glassware suppliers to fragrance developers, Illumina has developed a wealth of invaluable connections home and abroad that have aided Downlights’ rise. “We knew that we had a strong business story,” says Jennifer, “and we wanted a ‘classic’ range—an unchangeable glass with an eye-catching colour scheme in the logo.”
Serendipitously, Jennifer and Tony opted for purple and orange as the base colours of the brand, not realising they were also the colours used by the New Zealand Down Syndrome Association. “It was incredibly coincidental and fabulously wonderful! Emma also loves helping to choose the final fragrance, and if it gets the thumbs down from her, then we don’t run with it.”
Jennifer beams about “incredible changes” she’s witnessed in her protégé.
“This young woman struggled to raise her eyes to look at new people when I first her,” she says. “She would hold on to Tony’s hand the entire time, would not leave his side and barely spoke a word. When she first began working with myself and my daughter, Mia, Emma needed to be helped with certain tasks like positioning the wicks, but now she’s an independent woman who works on her own and easily interacts with strangers at PR events. Her true personality now shines through.”
Such is Emma’s confidence that she now even rides the ferry to the city from Pine Harbour alone.
“This is how much she has changed in just seven months. How privileged am I to be part of this journey, to see this one loving individual become the best person she can be?”
I ask Jennifer what she has learnt from Emma, and, admitting to “being a bit of a busy beaver” she says most definitely “patience!”: “Emma reminds me to slow down, enjoy the moment and cherish the small things in life. We have a special relationship and I feel deeply honoured and blessed to be the recipient of such an innocent love. My kids also adore Emma and Nicki [Emma’s sister, who also has Down syndrome, and plans to join the family firm] and the feeling is mutual.”
Jennifer reveals that Downlights has become an “international phenomenon” with Emma making the final three of Young Entrepreneur of the Year at the Attitude Awards. Prior to the awards, friends and family of the business partners got together to buy outfits and have their hair and makeup done. “Emma loves Disney movies—as do I!—and so I bought her a tiara as a special gift. The entire night she clung to her clutch, carried herself beautifully and waited with graceful patience for her video to be shared. Then there was the magnitude of the stories of the people who surrounded us. The event was so moving our table must have gone through all the tissues, napkins and more. It was nothing short of humbling, every single nominee was a winner, not just the finalists, so to be a finalist, what an honour.”
Emma’s story has greatly inspired others too, with the company inundated with emails and messages and international phone calls. “Mothers tell us that Emma has given them hope that for their babies with Down syndrome and fathers thank Tony for being so supportive of his daughter and setting an example for other dads,” says Jennifer. “Families have flown in from around the country to bring their children to meet Emma, she gives them hope for acceptance. I just feel like I have the best job in the world.”
It’s hugely satisfying that their business model is working so well, but such is their success that they sometimes struggle to keep up, often “literally stepping on each other toes” as they tend to their ever-growing list in their small premises.
“Tony, Emma and I often work 12-hour days to produce orders in response to media events such as when George Takei shared a video clip on his Facebook page that had 1.3 million views in 48 hours,” says Jennifer. “Such success will help us to move forward and help more people. The story will expand from Emma to Emma and her friends.”
To meet their expansion targets, the company is compiling a list of teachers, volunteers and prospective employees, with plans for new fragrances, products and equipment as well as strategic alliances and a larger premises. “We want to set an example for the world to follow about inclusivity, community care and love,” Jennifer says. “Downlights’ structure benefits the entire community. We have aligned ourselves with Interworld Fundraising to offer fundraising opportunities for schools and community groups which will help the business to grow, enabling us to employ more people with special needs.”
According to Statistics New Zealand, people with disabilities are three times less likely to be in work, and those that are generally receive less hours and on average half the median weekly income of that of their non-disabled counterparts.
“The world needs to change and the response we have had has certainly shown us that the timing is right,” says Jennifer. “Emma has given me purpose, a sense of direction and a commitment to the larger community. She’s given me a real energy boost, to keep working hard so I can help others. I’ve discovered a broader view of humanity, stronger determination, gratitude for all that I have, and the verification that love really conquers all.”