My Perfect Family: Ebony Sinclair
Ebony Sinclair is a go-getter born with Achondroplasia, a form of dwarfism. Ebony and her husband Ge...
My Perfect Family:Fragile X
To discover you’re the carrier of the genetic condition Fragile X only after your children are born ...
My Perfect Family: Nash Jones
The Jones family’s life changed forever when their youngest boy Nash was diagnosed with a rare condi...
My Perfect Family
Exploring the day today lives of tight-knit families, who are managing complex or unusual conditions...
My Perfect Family: Lydia Golding
6-year-old Lydia Golding was born with her right femur bone significantly shorter than her left. In...
My Perfect Family: Hatty
Hatty Walton is a 13-year-old star on the show Mystic, who lives with a hearing impairment. Hatty ho...
My Perfect Family: Twins
For young mum Nikki Stokes being a mother of five means there's never a dull moment. With non-verbal...
My Perfect Family: Georgia Heard
Georgia Heard thought she had parenting all mapped out. But when the younger of her two boys was di...
My Perfect Family: Max and Grace
Siblings Max and Grace are off on a road trip to Queenstown, putting Max's independence to the test ...
My Perfect Family: The Fergusons Part 2
Last week we met the Fergusons, a family of five who communicate using NZSL. Here, we join the Fergu...
My Perfect Family: The Fergusons Part 1
The Fergusons are an average family of five; they have fun, they fight, but mostly they get along. ...
My Perfect Family: Courtenay
Demar Gear was just five months old when she contracted meningitis, leaving her unable to walk or ta...
My Perfect Family: The Priestleys
Four of the six Priestley family members live with Autism. Because they’re able to function at a hig...
My Perfect Family: Bold As Brass
As New Zealanders living in Australia, Abbi and Morgan Brass received no government support when the...
My Perfect Family: Hunter
Hunter McGregor is a passionate gamer, a design school graduate, and he runs a B&B with his mum, Roi...
My Perfect Family: Southland Lockdown
Awards Night is the highlight of the social calendar for a vulnerable workforce at Southland Disabil...
My Perfect Family: CDKL5
Learning your new baby has a complex rare condition is life altering. Three Mums connect over their ...
My Perfect Family: Grace Payne
Grace Payne is a powerlifter who has competed in the Special Olympics as an autistic athlete. Now, 2...
My Perfect Family: Candle Dad
Raising four children alone is a challenge - more so, when two have Down Syndrome. Tony Sykes rose t...
My Perfect Family: Harper Ahern
Since being diagnosed with Muscular Dystrophy at age four, 10-year-old surfer Harper and his family ...
My Perfect Family: Tri Rugby
For members of Christchurch's Tri Rugby team - who live with intellectual disabilities - rugby is mo...
Brothers and Sisters
The unique perspective of those closest to us, our brothers and sisters.
My Perfect Family: Mahia & Tipene
Mahia and Tipene Stephens were born with a congenital eye disorder, causing their eyesight to deteri...
My Perfect Family: Welcome Home Stevie
Murray and Janine's son Steven was a gentle boy with autism. 18 months ago he left their house with ...
My Perfect Family: Jo & Leon
Young doctor Jo Scott’s career was on the rise when a brain haemorrhage changed her life. Seven year...
My Perfect Family: Friedreich's Ataxia
Preparing for a 30th birthday is a big deal in the Boon family. Three out of five siblings live with...
My Perfect Family: Kat and Ella
Kat Yearbury is a mother to two-year-old Frankie and six-year-old Ella, who has Cerebral Palsy and E...
My Perfect Family: Perrones
Young anime artist Bee Perrone lives with the rare condition, Ivemark Syndrome. Understanding this i...
My Perfect Family: Martine
Blind since birth, Martine Able-Williamson is now a global leader in the blind community. In this i...
My Perfect Family: Family Man Graeme
When Graeme Porter was diagnosed with an intellectual disability as a child no one expected him to r...
My Perfect Family: Meet the Asners
They call themselves the "The Brady Bunch of Autism". Descendants of Hollywood royalty, Matt and Nav...
My Perfect Family: Jaxon Woolley
15 year old Jaxon Woolley is already blitzing through para-sprinting records. An athlete to watch, J...
My Perfect Family: Kim Preston
Raising three boys is always a big task, especially when two of them have severe autism. But Kim Pre...
My Perfect Family: Zoe
Zoe Tate lives with Wolf-Hirschhorn Syndrome, a genetic disorder affecting her appearance, growth an...
My Perfect Family: Sam and Jason
Sam lost her sight as a baby due to meningitis, and her husband Jason has limited vision due to a ge...
My Perfect Family: No Respite
Life during a pandemic is a challenge for all parents with kids at home. But for parents whose child...
My Perfect Family: Alex
Performance is in the Walsh family’s DNA. When their youngest son Alex was born with Down syndrome, ...
My Perfect Family: Cystic Sisters
Kristy and Nikki are sisters and young mums who bring smiles to the faces of strangers by doing surp...
My Perfect Family: Tiffiney Perry
Always an active person, Tiffiney Perry continued participating in sports and achieving success afte...
My Perfect Family: Melody
Within just one year Melody entirely lost her vision, gave birth to her first child, and left her ho...
My Perfect Family: Malaena Cariño
12-year-old Malaena Cariño has a rare genetic form of epilepsy. Her whānau have exhausted most treat...
My Perfect Family: Southland
Southland Disability Enterprises employs over 80 people who live with a disability. For Mary-Ellen J...
My Perfect Family: Scruff's Bunch
Kim Preston (Scruff) reckon's she'll be caring for her three adult sons with Autism until she 'carks...
My Perfect Family: OCD
For two teenage sisters living with OCD, the world can often be an uncertain and scary place. In the...
My Perfect Family: Creative Clan
Ranger Ashurst is eleven and needs regular injections to control his Chrone's disease, his eight yea...
My Perfect Family: Tara Aumalesulu
Nine year old Tara is launching her very first album, Pele O Lo’u Fatu. Living with visual impairmen...
Tony Sykes never planned to be running his own candle-making company, but then he did not plan to have four kids either.
He started Downlights Candles as a way to support his two daughters who were born with Down Syndrome. When one of his daughters was nominated for an Attitude Entrepreneur Award in 2018, what followed was also unexpected; Seven Sharp ran a story, popular Star Trek actor, come social change maker, George Takei featured the company on his channel and business took off.
Tony was blown away by the people sharing their story; “The amount of exposure that we’ve had has been phenomenal, Disney Digital network contacted us and said we want to do an article, then video production company Everhance wanted to make a promotional video. After they finished the video they came to us and said we have a connection with George Takei of Star Trek fame, turns out he has ten million followers, and the bigger it gets the better it gets.”
Tony and his wife Carolyn first had two children Harrison and Claudia, and were very happy with their family life, so they had two more children.
Their two youngest children Nikki now 21 and Emma, 22 were born with Down Syndrome and Tony has since been doing everything he can to give them the best possible lives.
Tony tells the story of the family’s initial years; “We had four kids in six years and three bakeries, all at the same time, during that period we had just bought our first house which was a wreck and renovated it while living in it, so that was a busy sort of period.”
While Tony and Carolyn were initially shocked two of their children were born with Downs Syndrome, they quickly saw it as a strength and a blessing; “the initial thought was this is just a disaster, but the way it’s actually turned out is completely the opposite, they get on like a house on fire” he said.
In 2007 Carolyn was diagnosed with breast cancer and after a mastectomy and six months of chemotherapy she managed to beat it. But the cancer returned with a more serious terminal diagnosis in 2010, and after another battle, Carolyn passed away.
Tony fondly remembers Carolyn being positive and decided to mimic her attitude; “I wasn’t a particularly positive person at the time and now I live by the mantra of ‘Attitude Positive’ day by day,” the words tattooed on his chest act as a daily reminder.
I wasn’t a particularly positive person at the time and now I live by the mantra of ‘Attitude Positive’ day by day,” the words tattooed on his chest act as a daily reminder.
At the time of Carolyn’s passing Tony was working 70 hours in his cafe and raising four kids. He realised he had to make a change to be able to support his kid’s futures.
Their eldest daughter Claudia, 17 at the time, delayed going to university for a year to care for her two sisters and give her dad a chance to figure out what to do next, she said “I went from being fresh out of school to being a full-time caregiver, so it did make me grow up a little bit faster than I needed to if that wasn’t the situation.”
Tony removed himself from his business as he took on more employees and looked for a way to support Nikki and Emma.
The girls both went to Sommerville Special School in Auckland, but when Emma turned 21 she had to leave and it was difficult for her to find employment.
Since Tony had predominantly been self-employed he decided to make candles as a business to give Emma a job, because he thought it would be “a piece of cake.”
After finding out it was not quite so easy he was introduced to Jennifer Del Bel of ‘Illumina Candles’ to get some advice.
Following the media attention, Jennifer recalls “we sold a candle a minute for two days, so we very quickly developed a business name, a tagline, a logo, all within three or four days.”
‘Downlights Candles’ Tony explained, combines Nikki and Emma’s Down Syndrome and the light from candles, “I definitely wanted to have a connection between Down Syndrome and the name of the company.”
Working at the candle company has given Emma a huge sense of certainty, Tony said “her independence has really blossomed, it’s been fantastic really to see the changes in her, she feels achievement from what she’s doing, the confidence is just growing in her.”
Claudia wants her sisters to continue gaining this independence, “it would be great for them to have dreams and be able to follow those dreams and actually have something that they want to do instead of us going cool here’s an idea, let’s go through with that, I’d love for them to think of stuff on their own.”
Since the initial media exposure, things have snowballed with more coverage about Downlights Candles, creating more publicity and profit for the candle company. As they continue to grow, Tony hopes to employ more people living with Down Syndrome and create an inclusive workplace.
Tony is confident in his decision to do this, he says; “I don’t think I’ve sacrificed anything, I think I’ve just done what all parents do, how is that a sacrifice if you’ve done what you’ve chosen to do.”
