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Adopted Woman Unknowingly Passes Disease to Children
January 17, 2015 permalink
Monique Lair was adopted as a child and her genetic heritage was concealed from her. Had she remained in contact with her natural parents, one of them would have exhibited symptoms of Steinert disease, also called Myotonic dystrophy type 1 (DM1), before she reached child-bearing age. Instead she remained unaware of her condition while giving birth to two children. When one of the children developed symptoms, all family members were tested for DM1. Monique and both children tested positive.
Monique Lair is helplessly watching her children deteriorate.
She hangs onto two medical books she was lucky to acquire that tell her all about the disease her children inherited hoping a cure will be found before it's too late.
The guilt is unimaginable.
Lair, who was adopted at a young age, never knew she had myotonic dystrophy. She unknowingly passed the disease to her children.
Jessica, 22, and Marcel, 19, both have myotonic dystrophy type 1, also called Steinhart disease.
The disease affects more than just muscles. It also attacks the brain, cardiovascular and respiratory systems, vision, immune system, skin, reproductive and gastrointestinal systems.
“My children are deteriorating,” Lair says while holding back tears. “I wouldn't have had children if I knew I carried this disease.”
Myotonic dystrophy is a complex variable disease that is quite rare. Little information is known about it and there is no treatment or cure. Only one out of 8,000 people worldwide is diagnosed with the disease.
Lair says she thought myotonic dystrophy was just a disease that affects the muscles, but she quickly learned it was much more complicated.
Jessica was diagnosed at about 11 when she suffered from chronic ear infections.
There also were language and behavioural issues at school.
“I just knew something wasn't right,” Lair says. “But our pediatricians continued to say there was nothing wrong with her.”
Three months later, Lair had her daughter tested at Children's Hospital of Eastern Ontario in Ottawa.
“We were told Jessica had myotonic dystrophy. However, we were assured nothing would really come of it,” she says.
Because it's a genetic disease, both Lair and her husband, Dan, were tested. It came back Lair was the source.
“The doctors asked me if I wanted my son to be tested. He was also having issues.”
After diagnosis the situation became worse, Lair says, explaining there was bullying by both peers and teachers.
“Jessica had her head slammed against the wall. Teachers would tell us our kids were lazy and not motivated,” Lair says.
Both graduated, but Marcel might never hold down a job.
“He has a hard time focusing and he's always tired. He has a hard time swallowing and has been abused in the workforce. My kids are deteriorating right before me,” Lair says.
“They have an invisible disability. If they would have been born in a wheelchair they would have received a lot of help,” she says.
“They look normal. But what people don't see is what's happening inside.”
Lair is doing everything she can to give her son and daughter the quality of life they deserve. But, right now, the disease is winning.
It's a battle Lair wasn't prepared to fight.
In the last 10 years, Lair has had to educate herself, her family and medical professionals about the disease.
She's reduced her workload as a nurse to part time so she can care and advocate for her children.
“I'm not going to lie, this disease has certainly taken a toll on our family,” Lair says, adding there are few resources to help financially or to provide support to those with the disease and their family members.
“I know what this disease will eventually do to them. I want to help before the physical symptoms become too much.”
Lair says she recently decided to go public because she wants to help others facing a similar fate.
“Help has to start at an early age. The medical profession must get up to speed on this disease,” she says.
“There's hurtles we constantly have to jump over just to get the care they need and we're still coming up short. I just wonder if it's too late for them.”
Ideally Lair would like to see supports in place that would allow her children to begin to live independently.
“I'm not going to be around forever. I want them to be able to survive on their own,” she says.
“If I'm going to get any help it has to come before the physical disabilities begin to set in and that will eventually happen. I also want people to be aware that before they say things like these kids are simple or lazy, consider that there might be an underlying condition.”
Source: North Bay Nugget