Leslieville Lives; Stories from the ‘Ville – Denise Lemon-Clayton & Stephanie Clayton
Meet Stephanie & Denise. Theirs is an extraordinary journey.
I first heard of Stephanie & Denise through Donna Riddell (from The Duke fame) one day when I was chatting with her at the bar. “Omg, you have to do Stephanie’s story”, she said. She told me about Stephanie’s condition after one of the comedy night fundraisers held at The Duke was going to benefit Make-A-Wish. I contacted Denise shortly after and it took the better part of 8 months (the everyday challenges) before we finally connected.
When Denise was pregnant with Stephanie, her second of three children, a routine ultrasound at several months revealed that Stephanie had an Omphalocele. In other words, her organs were growing on the outside of her body. After the shock and devastation of this news set in, they began their long journey at Sick Kids hospital in Toronto.
Since that day, Stephanie has had 16 major surgeries and hundreds of invasive procedures. She suffers severe chronic pain, and takes multiple medications daily to help her cope with her many complex issues. You would never know it. Sitting there chatting with Stephanie & Denise was like visiting old friends. The conversation was fascinating: light and fun/airy at times, soulful at others. Stephanie, 15 today!, is mature beyond her years. I was a bit taken aback by her vocabulary and comfortability with 2 older dames (well, one was her mom!). It became clearer when we were talking about her growing up years, many of those spent in Sick Kids. “Most of my friends were nurses and doctors, so I learned early how to relate to older people.” Her confidence also stems from being in the public eye at a very young age. She’s spoken in front of large crowds since she was 4 years old: mostly fundraisers for Sick Kids, Starlight and Rope for Hope (Make-A-Wish). In 2016 she rappelled down City Hall with Stu Jeffries (morning host of BOOM 97.3) and raised over $2,000: $500 more than they anticipated.
*Video for Montreal Fundraiser, 2008 – (She’s come a long way since then, but to better understand their first 6 years have a watch).
In and out of hospitals since she was 1 hour old, Stephanie was schooled at home (and in the hospital) for the better part of her first 10 years. She spent her first birthday out of the hospital on Feb 14th, 2010 when Make-A-Wish Foundation made it possible for Stephanie and her family (Denise, Greg, older sister Sydney and youngest Danielle) to celebrate at Disney World in Florida. “It was a dream come true. Stephanie needed this dream to show her there is more to life than just medical needs. She worked so hard to fight through her pain, to stay alive.”
The timing couldn’t have been better. Before they left on their trip Stephanie lost her best friend. “Mom, why do all of my friends have to die?” Unimaginable for the average 8 year old girl. “That trip changed her life”, Denise recalls. “She sat on the floor at one point, raised her arms in the air and said ‘pinch me, I think I’m dreaming’ “.
To understand the number of treatments, tests, surgeries, pokes and prods she’s endured, Stephanie has a collection of what are called Bravery Beads. When she brought it out to show me, it looked like a ceremonial African headdress. She’s collected thousands of beads – each one symbolizing a needle, an x-ray, an MRI, a surgery and so on. I was stunned. Seeing that really hit home just how much of her young life has been spent in our hospital system.
Since then, Stephanie has improved remarkably. She still lives with chronic pain and complex gut issues but it hasn’t stopped her from getting on with her life. While she works with a pain team at the hospital (which includes a Psychologist, Physiotherapist, OT, Anesthesiologist, Nurse & Doctor), she is living at home and improving every day.
This year, her first at St. Joseph College School, she is already an honours student and received a scholarship to U of T. Last year, despite missing a hefty number of school days, she was Student Council President and on most sport teams and clubs. She was also a recipient of the Queen’s Diamond Jubilee Award for public speaking. “Along with Col. Chris Hadfield”, she grins. Denise has had her share of prominence as well. Her story about Stephanie, titled My Inspiration, was published in the 2010 edition of Canadian Voices, alongside many Canadian literary icons.
Much of Stephanie’s improvement started when they got Flare, their COPE service dog, seven years ago. She helps distract and comfort Stephanie when in pain, helps her physically move around/upstairs when she needs, & even helps her take her socks off! And she’s pretty adorable to boot. The other mainstays that have helped Stephanie get to where she is now, are Boston Children’s Hospital, (Hope Air flew them there), where she did a 5 week intensive programme, the Clayton’s neighbours and friends and most importantly, her family. You can imagine raising 2 other children as well as Stephanie requires a ton of support. Denise praises husband and Stephanie’s dad, Greg, for being there 1000% and of course Sydney and Danielle, who lived a lot of their life without their sister at home. They’ve made up for lost time by starting a Facebook page called ‘3 Cute Girls’, which raises awareness and funds to help Stephanie win her fight with intestinal failure and chronic pain, giving back to the charities that have helped her. Proceeds from the sale of their handmade angel necklaces and star decorations are given to either Make-A-Wish, Emily’s House, Starlight, Young Carers or Cope Service Dogs. This year it was Emily’s House.
For someone so young, Stephanie is wise like Buddha. It’s not a stretch to say she’s lived 100 lives. Many times the family thought they’d lose her through her/their intrepid journey. Her mantra, “I like to think about the happy part of my life, not the sad”, seems to be the ticket to her happiness, which is exceeded only by her generosity. When I was leaving, I wanted to donate to her 3 Cute Girls fundraiser and buy a decoration & necklace. She wouldn’t have it and I was given one of each as a gift. I’ll wear/hang them as reminders of the amazing 15 year old who taught me a few life lessons.
Older photos and video provided by the Clayton family