It was a matter-of-fact statement that made Craig Lewis’ heart soar: “Daddy, I have no more hairy nevus there.”
Five-year-old Ellaray rubbed her left hip as she said it, feeling a patch of the new skin that’s slowly overtaking the extensive brownish blemishes she was born with.
“That’s five years and 18 surgeries,” her dad said. “Her next question is, ‘Is the doctor going to finish the rest of me?’
“This little girl is so close…”
Ellaray’s story first captured the hearts of Semiahmoo Peninsula residents in May 2008.
Born with a rare, hairy skin condition that plastered her body with more than 100 hairy brownish spots and a tail-like tumour that stretched nearly eight inches across her bottom, Ellaray has undergone multiple surgeries and treatments in her five years – with more to come. Her next is set for June 5.
Three years ago – 2½ years into the tot’s lifelong fight against what developed into an aggressive skin cancer – doctors began implanting expansion bags under Ellaray’s skin, to grow new skin to replace her diseased tissue.
It was last month when Ellaray showed her dad the progress on her one hip. Next month, doctors will start work on her front side.
The surgery is scheduled for three days after a fundraiser organized to support Ellaray and her dad on the journey.
Set for June 2 at the Royal Canadian Legion Crescent Branch 240, it gets underway at 8 p.m., and organizer John Hovan is confident it will be a good night.
“There’s a lot of people yakking it up,” Hovan said.
Plans for the evening include live entertainment by local bands, Johnny Tops and O’Hara Lane, the latter of which Hovan is a member of.
Both groups have donated their time to help the cause, and Hovan – who went to school with Craig Lewis – said everyone is excited to, once again, take some of the load off of the pair’s difficult journey.
“Me and Ella have become really close,” he said. “She’s cool. I really want to help as much as I can.”
Lewis said his daughter’s progress – actually seeing the hairy nevus disappear from Ellaray’s body – brings some relief to the heartbreaking side of things: the days when Ellaray is so uncomfortable or in so much pain after a procedure that all she can do is lay on her tummy.
Adding to the heartbreak is the recent realization that Ellaray’s condition is more than skin-deep – it’s starting to affect her hearing. Lewis said hearing loss was one of about “30 or 40 things” he was warned a couple of years ago could start to show once Ellaray turned five, which happened in December. She started telling her dad she can’t hear as much about a month ago.
For now, Lewis is focusing all of his efforts on getting Ellaray better, and keeping her happy along the way.
The community support – which started when Hovan spearheaded the first fundraiser four years ago – has helped tremendously, and Lewis is grateful it is continuing.
“He started a wave and it doesn’t stop,” Lewis said of Hovan.
“Bless these people for they are truly heroes to Ellaray and us to get through this next year or more of operations and treatments.”
Money from previous fundraisers helped the single dad with purchases such as the enriched formula Ellaray needed in her early years, and a vehicle in which he logs about 6,000 kilometres a year just for their hospital visits.
Without the financial support, “we would never make it,” said Lewis, who gave up work to ensure Ellaray got the care she needed.
“All I want is for her to get better.”
Proceeds from the fundraiser will benefit a trust account in Ellaray’s name at Coast Capital Savings. Tickets, $20, are available at the legion, 2643 128 St.
Bumps on the road currently being travelled by five-year-old Ellaray Lewis may well ease the journey for other youngsters in the future.
Ellaray’s dad, Craig, said he’s encouraged by doctors’ reaction to a device his father, Al, developed after studying expansion bags that had been implanted under Ellaray’s skin.
Ellaray started getting the bags, four at a time, 2½ years ago. Last year, one burst inside of her, leading to an infection that put her in “real bad shape.”
Lewis, curious about how the problem occurred, began taking the used bags home and his father studied the injection sites under a jeweller’s loop.
They figured out that if two needles go into the same hole, it takes less pressure on the bag to cause a leak.
“We figured out a medical little bloop,” Lewis said.
“It’s kind of like a dart board – they never know where they’re putting the needle in.”
With an aim to eliminating the guesswork, Al Lewis fashioned a “locator” out of watch crystals.
“We showed it to the doctors and they actually hugged us,” Craig Lewis said. “They’re going to try to introduce it into the system.”