'This girl is mine'

Ellaray’s eyes go wide when she spots the bright-eyed girl staring back at her.

Gurgling with excitement, she gasps in delight, her tiny hands lifting to her cherub-like cheeks, the brown-eyed toddler across from her mimicking her every move.

Ellaray ducks through a nearby doorway, out of sight of the adorable stranger bearing the identical patches of brown skin that dot her own cheek and eyebrow, her pink jumper swaying bell-like with her movements.

But curiosity pulls her back to the mirror again and again. Each time, her delight at the mysterious girl who never skips a beat in meeting her gaze is as pure and evident as only a child’s emotions can be.

It’s as if she hasn’t a care in the world.

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The words of the pediatrician at Ellaray’s birth still ring clear in Craig Lewis’ ears:

“There’s something we don’t know.”

It was Dec. 29, 2006, and Ellaray’s mother had been in hospital for nearly a month leading up to this moment.

When Ellaray finally arrived, Lewis saw that his tiny daughter was plastered with brownish spots, the largest of which covered her back and tummy right down to the middle of her thighs, resembling an oversized pair of shorts.

More astonishing, her bum was disfigured, her genital area surrounded by wart-like growths and she sported a flat, tail-like tumour that stretched nearly eight inches across.

The doctor’s jaw dropped at the sight, Lewis recalls, as Ellaray padded happily from toy to toy in the living room of the South Surrey townhouse the pair call home.

“He’d never seen it.”

The hairy skin condition, generally called bathing trunk nevus, is believed to be caused by defects or problems that occur as a baby grows in the womb. In a small percentage of cases – Ellaray’s included – it develops into an aggressive skin cancer and satellites beyond the skin’s surface into the muscles.

Treatment for this disease, called giant congenital twin nevus, involves removing the affected skin and muscles as quickly as possible.

For Ellaray, that has already translated into five surgeries – one every 60 to 90 days. Her sixth is scheduled for May 27. (Doctors would operate more often, but it takes that long for each round of anesthetic to clear her little system.)

With each surgery, surgeons remove skin and tissue, and then stretch her healthy skin closer and closer together, “until they can’t pull it anymore.”

“It doesn’t look pretty, but it’s what they’ve got to do,” Lewis says.

With approximately 130 spots to deal with, including at least 20 on her head, doctors expect to operate on Ellaray every two to three months, like clockwork, for the next three to five years.

When they can no longer stretch her skin to cover the parts they remove, they will grow replacement skin “in a bag on her back” and graft it on.

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The first four surgeries didn’t phase Ellaray – one of the perks of her young age, no doubt.

But Lewis was devastated to discover a few weeks ago that his otherwise carefree daughter is starting to realize what those hospital visits mean.

It became apparent March 6, just before surgery to have her left hip flank and a two-inch wide strip of cancerous skin on her back removed. Until that day, Ellaray went into the surgeries without batting an eye.

“This time, I handed her over to the nurse and Ella kicked and made a fuss,” he says. “As I went through the doors (into the operating room), she knew where she was going.”

The anesthetist told Lewis to take her and pin her shoulders.

“She was fighting so much; she knew what’s happening to her.

“I felt like, looking in her eyes, I’d done the worst thing in the world. She looked at me like, ‘Dad, what are you doing?’”

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Lewis, 44, is a certified journeyman jeweller with a passion for fishing born of a childhood spent largely on and around the water.

His knack for hooking “the big one” – including a couple for John Wayne when Lewis was just 12 – earned him the nickname Lucky Lewie, and a stack of photos he shares as Ellaray perches casually on his shoulders backs the moniker.

Born in Powell River, Lewis started his own fishing charter business in 1986, developing a reputation for both success and discretion that attracted tourists from as far away as Europe and Japan, as well as celebrities, such as Denzel Washington and Merv Griffin.

Lewis ran the business for about 20 years before Ellaray came along, designing and creating jewelry in his parents’ Crescent Beach studio in the off-season.

He also worked as a shipwright at Goldstream Boathouse Marina and as a fibreglass technician for Crescent Beach Boatbuilders.

“I didn’t stop working in almost 21 years,” Lewis says. “I never missed a day. It just was born in me to go out in that boat.”

Lewis was running tours to spots around the Gulf Islands on his 25-foot SS Captain’s Ride when he met Ellaray’s mom. She worked with him for a time and a friendship developed, he says. He introduced her to his parents and they spent Easter together.

But she wasn’t what she appeared to be, and, after spending the bulk of her pregnancy in jail, hasn’t seen Ellaray in nearly a year.

Lewis was granted full custody last July. Apart from a half-hour here and there, the father and daughter haven’t been apart since the day she was born.

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The journey for Lewis and Ellaray has been a tough one.

Lewis hasn’t worked since Ellaray’s arrival. Given Ellaray’s condition, he is hesitant to put the gentle, and extremely personal, care she needs into someone else’s hands.

Her diapers must be changed quickly after she wets or dirties them, or her skin becomes irritated and she scratches at her scars. Often, Lewis bathes Ellaray three times a day.

“If I don’t put her in the tub or in the sink (for) a complete clean, her little hands are in there scratching all the surgical lines,” he says. “It betters the day for her if it’s a good, clean change.”

In the days following her surgeries, the sting of urine or feces on her incisions causes shriek-evoking pain, Lewis says. With each change, Lewis adds ointment or other cream to help ease the discomfort, and then massages the skin in preparation for stretching that will happen during the next surgery.

And for several days after, the only place Ellaray can find peace is in her dad’s arms.

On a daily basis, her most comfortable perch is on her dad’s shoulders, where there’s the least pressure on her tender bottom.

“She’s always in my arms,” he says. “It’s how I keep her really happy.”

Lewis must also take steps to protect Ellaray from exposure to what most would consider normal childhood illnesses, such as colds and flu. If she gets sick, doctors won’t operate. It happened once last fall, and Lewis is determined to do everything possible to prevent another delay.

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And then there’s the financial strain.

Lewis sold nearly everything and moved back to the Semiahmoo Peninsula to get Ellaray the best medical care possible at BC Children’s Hospital. And he struggles to get by on $642 a month – half of which goes to rent for their subsidized townhouse.

The rest must cover expenses, including diapers and a pricey brand of formula considered the next-best-thing to breast milk. With surgeries lined up for years to come, Ellaray needs it to boost her immune system. She goes through a case of it about every 3½ days.

Lewis also has a prescription to get breast milk from BC Women’s Milk Bank for Ellaray. Because of the price – $110 for a two-week supply – he adds it sparingly to her formula, just a teaspoon or two to each bottle, to stretch its goodness as far as he can.

Lewis compares his struggle to climbing Mt. Everest – or falling off of it.

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Doctors haven't been specific with what Ellaray’s future holds, and Lewis is OK with that. One day at a time is enough to worry about.

“I’m not really wanting to know everything about it, because I’m trying to keep my spirits up,” he says.

The kindness of strangers and long-lost friends has gone a long way.

“I’ve cried more this year than ever, for the people that are helping me,” he says.

After learning of their plight before Christmas, women, who Lewis describes as “the kindest ladies,” came to his door with bottles of frozen breast milk. Another woman delivered a box of diapers and a turkey; and, a family showed up with Christmas gifts for Ellaray.

Most recently, an old schoolmate has stepped up to rally support. John Hovan, who attended Ray Shepherd Elementary and Semiahmoo Secondary with Lewis, has organized a fundraiser at the Crescent Legion this month to help them “through the rough spot.”

“She’s a sweet little girl,” Hovan says of Ellaray.

“She’s all smiles and really cute and she’s just having a rough time. It looks like she was dipped in purple Kool-Aid from the waist down.

“Craig’s doing it all on his own,” Hovan adds. “I think it’s pretty honourable.”

People are “coming out of the woodwork” offering to help the cause, Hovan says.

The legion has donated the hall and a trust fund, the Baby Ellaray Recovery Fund, has been set up at the Ocean Park Coast Capital Savings.

The May 31 event – featuring Hovan’s band, O’Hara Lane, and Mary’s Gunns – includes a silent auction.

Tickets, $20, are available at the legion (2643 128 St.) or by calling Hovan at 604-538-4718 or 778-996-4718. Hovan also would like to talk to anyone interested in donating items for the silent auction.

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Lewis is the first to admit he “had a different plan” for his life, one that included living on Vancouver Island.

Everything changed when Ellaray was born.

Lewis says officials with the Ministry for Children and Family Development gave him an “out,” telling him “there’s no way you should even take this on.”

But walking away from his little girl was never an option he considered.

“I said, ‘This is my baby, I’m happy, let’s go’,” he says. “This girl is mine.”

It’s an attitude his parents, Al and Myrt, can’t help but be proud of.

“He’s been a wonderful father,” his mom says, noting her son had never changed a diaper or even babysat before Ellaray.

“He could’ve (given her up). He just said no from the very beginning, and so did I: ‘It’s your life, this is Ella and we’ll get her through it.’

“We are very proud of him. He’s given up a lot. It’s been quite a story, a lot of heartbreak.

“He loves her.”

While Lewis tries not to dwell on the future, he does worry what emotional scars may accompany Ellaray’s pronounced physical ones.

“She’ll never be a girl that walks down the beach with a bikini. It’ll be a one-piece suit.”

For now, Lewis focuses on the bright side.

“This is my little engine,” he says as he scoops Ellaray up for a cuddle.

“I don’t have bad days with her.

“Someday, me and her, maybe we’ll have our own jewelry store.”

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