Balancing parenthood and neuromuscular disease is not just possible — many dedicated moms and dads who live that reality every day say having kids is the best decision they've ever made

posted on July 7, 2014 - 9:23am
Matthew Martin and Amanda Hall have more than a few things in common. They’re roughly the same age — Martin is 28; Hall is 30. They both call the state of Texas home — Martin in Rowlett; Hall in Glenrose. Then there’s the fact that each lives with a neuromuscular disease — Martin was diagnosed with Duchenne muscular dystrophy (DMD) at the age of 8; Hall with...

50 women are needed to fill out a questionnaire about the effects of myotonia congenita and paramyotonia congenita on pregnancy and delivery — and vice versa

posted on July 19, 2013 - 5:00am
Upate (Dec. 18, 2013): This study of pregnancy and delivery in women with myotonias is no longer recruiting new participants. The investigators will continue to collect data forms from people with whom they are already in contact. Investigators at the University of Rochester (N.Y.) are seeking participants for a questionnaire-based study of pregnancy and delivery in women with nondystrophic...

Can love, courage and modern medical technology prevent muscular dystrophy from being passed on to the next generation?

posted on March 31, 2011 - 12:01pm
QUEST Vol. 18, No. 2
It was the worst Monday morning of our lives — and Mondays are universally bad. My wife, Monique, and I woke up to a snow lockdown in London. The snow had started gently enough in the evening, but now on this January morning it was a white strait jacket. We could hardly move, but we desperately needed to get to Nottingham at all costs. Our potential future children — two fertilized...
posted on July 1, 2010 - 5:35pm
QUEST Vol. 17, No. 3
Having a baby can be the most thrilling and rewarding experience of a woman’s life, yet it also can be fraught with fear and uncertainty. This is especially true for women with neuromuscular disease. This special report takes a look at the issues that arise for expectant mothers with muscle disease and finds that, with proper care and planning, these women are usually — although not always...
posted on June 30, 2010 - 4:58pm
QUEST Vol. 17, No. 3
Stacy Wiparina, 35Dayton, Ohiotype 2 spinal muscular atrophy Stacy Wiparina has never walked — never even crawled — but she’s achieved all the goals she set for herself as a child. “One was driving, another was college, another was having a career, another was having a husband, and the most important one of all was being a mother,” she says.
posted on June 30, 2010 - 4:33pm
QUEST Vol. 17, No. 3
When Emma Ciafaloni was preparing to become a neuromuscular disease specialist in the 1990s, and even when she directed the MDA neuromuscular disease clinic at Duke University in the early 2000s, she was struck by the lack of information she could offer patients who wanted to become pregnant.
posted on September 1, 2007 - 9:54am
QUEST Vol. 14, No. 5
I believe in miracles. I look at her face every day. Her name is Grace...and she is our miracle. Living life from a wheelchair, and knowing each day the physical limitations I have, it was no surprise when doctors confirmed that for me to go through pregnancy and a natural childbirth would be dangerous. It was no surprise, but it was devastating to face the reality that I’d never experience this...
posted on July 1, 2007 - 4:56pm
QUEST Vol. 14, No. 4
Our son is wonderful,” says K.M., a 42-year-old San Francisco area events manager and the mother of a 7-year-old boy with Duchenne muscular dystrophy. “I couldn’t ask for anything more. He’s everything I ever wanted. Of course I wouldn’t want this disease, but he’s just such a great, sweet kid, and it’s been our hope and dream to give him brothers or sisters.