Unlike her two older brothers, little Lucy Taylor will live into adulthood. But parents Sharyn and Steve took a huge risk to bring her into the world.
Sharyn Taylor’s heart was pounding as she dialled the number of the genetics clinic. She asked if her test results were back yet and waited anxiously for the answer. When she heard the words, “Your baby is female,” Sharyn, who was 12 weeks pregnant, broke into a huge grin.
Her joy wasn’t because she wanted a daughter to dress in pretty pink outfits or buy dolls for. But because she was desperate for a child who would live beyond its twenties – free from the cruel condition that affects Sharyn’s other children.
Sharyn and husband Steve have two sons, Hamish (9) and Austin (7) who suffer from Duchenne muscular dystrophy (DoD), a disorder that afflicts only boys. The result of a faulty gene, it causes their muscles to waste away until they can’t walk.
Eventually they are unable to breathe properly and their hearts may struggle to beat. It’s rare for boys with DoD to reach age 30.
Sharyn (32) and Steve (34), of Hamilton, knew there was a chance their sons could have the condition. Sharyn’s brother Stephen died of it at 15, when she was 10. Eight years later, tests showed she was a carrier of DoD and could pass it on to her children.
“I was told there was a 50 percent chance my sons could have it,” says Sharyn, an early childhood teacher. “But I’ve always loved kids and wanted to be a mum. We didn’t think we’d have a child with disabilities.”
When Sharyn was pregnant with their first child 10 years ago, she and Steve decided not to find out the gender. When Hamish was born, the midwife took blood from his umbilical cord and sent it off to be tested.
“It showed he had Duchenne muscular dystrophy and we were in shock,” says Steve, a roading technician. “We told our families but didn’t say anything to our friends for a couple of years.”
At first, there were no obvious signs that Hamish had such a devastating condition. But it took him until the age of 18 months to walk and when he did, it was with his chest sticking out, which is a classic sign of DoD.
“We would just say he was proud of himself,” smiles Steve sadly.
At three, Hamish needed regular physiotherapy and wore leg splints at night. “His problems weren’t noticeable to people who didn’t know him,” recalls Steve. “He was like any normal kid but he couldn’t run as fast.”
The Taylors were keen to have another child and discussed having a test to confirm the gender of their unborn child 10 weeks into the pregnancy.
“We decided there was no point getting the test. Abortion wasn’t an option for us,” says Steve.
All they could do was hope the baby was a girl, or a boy without the faulty gene. “We were naïve – we thought it couldn’t happen to us again,” says Steve.
But their male baby, Austin, did have DoD, and his parents were devastated. So far Austin hasn’t had too many problems. He often walks on tiptoes (another sign of DoD) and needs help with stairs, but he is still mobile.
“He falls over three or four times a day – we pick him up and off he goes,” says Steve.
Hamish, however, has been unable to walk since September last year and is in a wheelchair. “He handles it pretty well but sometimes, when he gets frustrated, he’ll say, `Why me?'” Steve says. “I don’t know what to say – I usually tell him that’s the way it is and you have to work with what you’ve got.”
Sharyn and Steve have told their sons that the DoD has made their muscles weak but not about their shorter life span.
“We have to let them have their hopes and dreams,” says Steve. “Hamish wants to live in Sydney one day, get married and have a couple of kids. We can’t tell him this isn’t going to happen. Take away his dreams and what has he got left?”
Two years ago, Sharyn and Steve talked about their sons at a school assembly. “There were a few parents whispering in the car park about what was wrong, so we decided to tell the whole school,” says Steve.
“We weren’t looking for sympathy, we wanted people to understand rather than talk behind our backs.”
The whispering has now stopped and pupils accept their sons, especially Hamish. “They understand he’s not different, he’s just in a wheelchair,” says Steve.
The boys love school, playing with Lego and watching movies. They play wheelchair hockey, swim and Hamish even participates in the school cross-country. The stress caused Sharyn and Steve to be put on antidepressants a few years ago but they wanted another child without DoD.
“We decided to find out the gender,” says Steve. “We couldn’t handle three kids with Duchenne and we said we wouldn’t go ahead with the pregnancy if it was a boy. It was a huge risk.”
It was a girl. “I was so happy, not only because she was healthy but because we didn’t have to have an abortion,” says Steve.
Sharyn adds, “It was like a huge weight had been lifted.”
Lucy was born in February and while she is healthy, she may also be a carrier of DoD. The Taylors told their boys their sister won’t have the same problems they do. “They’re very happy about that,” says Steve.
“It’ll be odd having a kid who can do things like running races. The idea of being normal is weird to us.”
They are wary of making a fuss of Lucy but don’t want her to feel neglected when they spend time caring for the boys. “It’s going to be a balancing act,” says Steve.
For now, the family are celebrating Lucy’s arrival. “When she’s old enough, we’ll tell her about Duchenne,” says Steve. “We have hopes for her future that we can’t have with the boys.” Written by Donna Fleming Photograph by Ross Brown
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