Mind & Spirit

Miracle children

Miracle children

Author: Canadian Living

Mind & Spirit

Miracle children

This story was originally titled "Miracle Children" in the January 2009 issue. Subscribe to Canadian Living today and never miss an issue!

This special time of year sparks warmth and delight in families across the country. For many of us, it’s a season linked to miracles. Whether we believe in the birth of Jesus, the story of Santa Claus or simply the incredible capacity for love and kindness in our fellow human beings, we are often inspired by hearing seemingly magical tales.

What better way, then, to honour this season than to share the stories of three truly beautiful children. All three of these little ones are living with significant disabilities. All have brought unbelievable joy to their families and hope into their homes. Even in their short lives, they have already taught astonishing lessons to those who know and love them.

These children are, in the true sense of the word, miracles.

David Sweeney 
Little David Sweeney is just coming up to his first birthday. But this handsome baby has already seized hold of a lot of hearts. There are the nurses in the neonatal intensive care unit who cheer his every milestone. And the dozens of people who write caring messages on his mom’s blog.

And then there’s David’s family in Humboldt, Sask., about 110 kilometres east of Saskatoon: his parents, Tracy and Brent; his brother, Daniel, 2; and his half-siblings, Jake, 13, and Lyla, 15. Although David has never spent a night away from hospital, he is very much a part of family life.

David was born in January 2008 at Saskatoon’s Royal University Hospital with a giant omphalocele, a severe birth defect in which the intestines and other abdominal organs protrude into the base of the umbilical cord. In David’s case, his intestines, and his spleen, liver and other organs were on the outside of his body in a thin sac of tissue. He also had a hole in his heart.

Prenatal ultrasounds showed a condition so critical that he was not expected to survive. “It was the ultimate worst horror of my life,” says Tracy. But David’s parents, while devastated, refused to terminate the pregnancy. “We were so far along, and the baby was already kicking.” They’d even picked out his name, after an uncle who died early in Tracy’s pregnancy.

Still, “We didn’t furnish a nursery. We never had a baby shower,” says Tracy. “They were just going to induce me and give him a warm place to die.”

Miraculously, David seemed strong enough at birth that medical staff and family members began to hope. He was hooked up to IVs, monitors and a breathing tube. His condition was still precarious. He was having difficulty breathing on his own, and he needed a series of surgeries to place his organs inside his abdomen.

But when it came to love, David already had all he needed. Tracy and Brent moved with Daniel into a nearby Ronald McDonald House so they could be with their baby around the clock. “I don’t actually see the omphalocele when I see him. I see his face,” says his mom. Their bond is tight. David often stops crying and smiles when his parents enter his room.

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Tracy and Brent have seen their son’s personality shine despite a string of medical setbacks, such as an airway collapse and infection. “He watches the nurses and doctors and cleaning staff. He’s always got these big, huge saucer eyes,” says Tracy. “As long as there’s somebody in the room, he’s content. Big, big smiles from him.”

His parents can’t help but think there’s a reason why David is surviving against the odds. “To fight through all this, he’s destined for huge things. Maybe he’ll make a difference in people’s lives,” says Tracy.

He’s already made an impact. Nowadays his mom takes time to smell fresh laundry, or cut a few lilacs from the garden. “David has taught me a greater appreciation for life,” she says. “When you see a baby who struggles, that teaches you so much.”

Tracy and Brent don’t yet know if their youngest son will be home for Christmas. But either way, they’ll count their blessings at this time of year. After all, they’ve already had their miracle.

“Christmas means we’ve had a year of David with us, when we didn’t think we were going to have any time,” Tracy says. For this family, every breath is precious.

“I think we’re all going to be a little more appreciative of the true meaning of Christmas.”

Danny Gallant
When Danny Gallant was delivered by emergency caesarean section 12 years ago at the IWK Health Centre in Halifax, the tiny infant was in grave distress. He wasn’t breathing, his heart rate was unstable, and he had suffered brain damage. Doctors made a dire prediction: They told his mother, Jennifer, that Danny would never leave the hospital alive.

Happily, they were wrong. Two months after his birth, on Jennifer’s 21st birthday, this young single mom was able to bring her beautiful baby home to Dartmouth, N.S. But still his doctors led her to believe he wouldn’t live long. “Every day I’d open my eyes in a panic, and jump up and run to see if he was still there,” Jennifer recalls.

It wasn’t until Danny was two years old that he was finally diagnosed with cerebral palsy, a condition often caused by brain damage around the time of birth. He would never be able to walk or talk, and he had a cognitive disability, the extent of which no one at that point could predict – but he wasn’t dying.

Overwhelmingly relieved, his mom set about providing her only child with the best possible quality of life. She had grown up with a close second cousin who used a wheelchair, so she was quite comfortable with disabilities. “It never occurred to me that his disability was a bad thing,” she says. “Life goes on.”

Over the following few years, Danny was treated for such complications as seizures and respiratory problems. But, although he still needs a gastric feeding tube for eating, these days he’s healthy and full of life. Danny makes sounds and uses body language to communicate – he’s fully aware, but has the cognitive abilities of a much younger child.

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His mom says he constantly astounds her. The early years were clouded by medication with numbing side-effects. But now that Danny is off those strong drugs, his cheery, carefree personality has asserted itself. “His true self has surprised me,” says his mom. “So much was in there that I didn’t know about. Now he smiles and responds.”

Danny thoroughly enjoys watching movies and being in the water with a specially adapted suit that keeps him afloat. He thrills at being whirled around the nearby skating rink in his wheelchair. And he loves spending time with his grandparents, his dad and his friends. “He’s a happy-go-lucky kid,” says Jennifer.

Danny’s favourite activity when kicking back? Lying on the couch watching TV, like any typical preteen. “I have a super-big TV,” says his mom. “I figure that makes up for all the bikes and skateboards that he’s not getting.”

This devoted parent has fought hard to make sure Danny has the same opportunities as other kids in his neighbourhood. When he started school, she accompanied him almost every day to ensure his needs were met, keeping her own school course load to a minimum so she could focus on her son. Now Danny has a rowdy gang of classmates who show up at the front door every morning to pick him up and wheel him to school.

December is a particularly festive time for the Gallant clan, because Danny celebrates his birthday just a week before Christmas. It’s a big deal
in his household, and the whole class looks forward to a party crammed with games and activities.

“Every year is special,” says Jennifer. “I never thought I’d be putting so many candles on the cake. Danny reminds me every day, with his big smile and the way he enjoys life, that life is precious and needs to be lived to its fullest.”

Indeed, Danny has transformed his mother’s life. His birth inspired her to pursue a career in health care. This year, she’s finishing her nursing degree and plans to apply for medical school.

“I never dared dream that I could be a doctor,” says Jennifer. That’s just one of the positive ways that Danny has made a difference. “I’m prepared to do what’s necessary to ensure everything in life is perfect for my perfect child.”

Indeed, Danny has changed his mom in so many ways. “I can’t live my life any other way but to feel grateful for everything – every breath, every step, every ability and freedom I have,” she declares.

He has brought the gift of peace and happiness to her life. “How can I see him enjoy life through unbelievable challenges, and not enjoy mine?” she says. “Now I feel joy in most things I do.”

Page 3 of 5Elisa Linton
At 14, Elisa Linton of Toronto is tall for her age, blond and striking. Her laugh is infectious. Her parents, Elisabeth and Randall, dote on her, and her siblings, Connor, 16, and Jessica, 18, simply adore her. Years ago, her grandpa nicknamed her Shooting Star because of her sparkle and energy.

But Elisa has a genetic disease called Sanfilippo syndrome, which means she’s missing an enzyme needed to break down certain chains of sugar molecules in her body. As these molecules build up in her cells, her body can’t develop the way it’s supposed to, and the disease gradually robbed her throughout her childhood of abilities she had developed. Once a chatty little girl, Elisa no longer speaks, and walking is becoming difficult.

Nevertheless, she continues to amaze her family. Most kids with Sanfilippo syndrome are using a wheelchair by age 10. Their average life expectancy is less than 20 years. But Elisa is beating the odds and still always fighting to hang on, says her mom. “Her doctors are quite blown away and thrilled.”

Elisabeth and Randall were in deep shock when they first learned why, at age four, their third child had some speech delays and low muscle tone, which showed up in her inability to do such activities as somersaults. But though they were terrified of what lay in store for them, they realized that the only way to have a normal family life was to enjoy each day as it came. “We made a conscious effort right away to be strong for our kids,” Elisabeth recalls. In the early years, they camped at provincial parks together in the summer, and skied at nearby resorts in winter. “Elisa just fit right in with us.”

But Elisa’s parents also knew they couldn’t ignore the diagnosis, especially as her symptoms became more marked. And since medicine wasn’t making progress to treat their daughter – Sanfilippo syndrome is rare, affecting only one in 24,000 children worldwide – they decided to raise research funds themselves. “We just needed to know that we were doing everything possible to help Elisa,” says her mom.

Through galas, auctions, marathons and golf tournaments, their Sanfilippo Children's Research Foundation has so far raised more than $3 million. Thanks to their efforts, new headway has been made into unlocking the secrets of Elisa’s disease. Researchers, for example, have produced promising results with experimental stem-cell transplants in mice bred to develop Sanfilippo. And results of another study suggest that the supplement glucosamine may improve behaviours such as hyperactivity in kids with Sanfilippo syndrome.

“We will never give up hope that something will happen in Elisa’s lifetime,” says her mom.

The bonus? Not only will this work benefit Elisa, but her miracle will also be shared with the thousands of other children who are wrestling with the same disease.

Many qualities in Elisa haven’t changed. She’s still warm and affectionate. At a kids’ sleepaway camp (one that includes an integration program, which allows kids like Elisa to participate), she relishes watching other kids shout and run around. She giggles out loud when her older brother and sister make funny faces and sounds to entertain her. For her parents, it’s a delight to watch. “They’re great with her,” says Elisabeth. “They love to bring out the best in her.”

Page 4 of 5And sometimes her best seems miraculous. Elisa has gone through unsettling periods in which she’s lost her ability to make facial expressions, instead staring right through her parents and siblings. But each time, she regains a bit of ground. “All of a sudden she has this twinkle back in her eye, and she looks right at you, focusing and trying to connect with your eyes,” says her mom, adding, “I’m just totally lost when I can’t communicate with her. When she gets that sparkle back, it’s like I won the lottery. My heart’s never warmer.” It’s as though Elisa is showing her family that she’s still a shooting star.

And Elisa is also teaching her siblings to be grateful for every day. “They know this could easily have been them because it’s genetic,” says Elisabeth. And they’ve learned compassion. “I know that their lives are richer. They’ve certainly had to walk steps that they wouldn’t necessarily choose to walk. But they are going to be more blessed and more enriched because of it.”

This time of year is deeply meaningful for the Lintons, who are Christians. Elisa is a big Santa fan, and she loves Christmas carols. “Away in a Manger” and “Jingle Bells” are such favourites of hers that the family sings them to her year-round.

“Christmas is the basis of our faith, and it’s a time of hope for us,” says Elisabeth. “It’s a time when we reflect on how fortunate we really are. Elisa has brought joy to our family.”

The Lintons often refer to this journey as a detour. “It’s taken us off the path,” Elisabeth concedes. But she points out that such diversions “can take you on routes that you would never believe could be so beautiful.”

Feel the love: Give generously
Wondering where to send your donation dollars this year? Hundreds of thousands of kids with disabilities benefit each year from the support and services of Canadian charitable organizations. These worthy causes have been handpicked by the families in our story.

• Canadian Association for Community Living
(416) 661-9611

• Planned Lifetime Advocacy Network
(604) 439-9566

• Sanfilippo Children’s Research Foundation
(416) 223-1911

• Canadian Society for Mucopolysaccharide and Related Diseases
(604) 924-5130

• Ronald McDonald House Charities of Canada
(416) 446-3493

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Mind & Spirit

Miracle children