People love to tell you how your life is going to change once you have a child. Sleeping more than a few hours at a time? Kiss that goodbye. Like fancy restaurants? Not anymore. Not comfortable around body fluids? You will be. As…
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Stephen T. Marchello.

Stephen Marchello was born to play ice hockey. Like any sport, plenty of kids show the kind of raw talent that makes them seem destined to play professionally. What set Stephen apart was his indomitable spirit. “He just wouldn’t quit,” explains his father,…
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Couple with Spina Bifida Build Life Together

Couple with Spina Bifida Build a Life Together Kerry and Dan Wallace have a message for people living with spina bifida and other disabilities: Your limitations don’t define you. “There are very few things left that are not able to be accomplished by…
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Holidays can be stressful for any of us, but for those who have experienced the death of someone close, this can be an especially difficult time of year. Holiday celebrations go hand in hand with traditions – things we do each year with…
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3 generations of cavernous angioma

When Julie DeMichiel was 10 years old, she had an episode of severe headaches that lasted for about a week, followed by extreme weakness on the right side of her body. At the time, in the 1960s, there was no such thing as…
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Life with cerebral palsy

If you look at Mark Turan’s Twitter feed, you would probably never guess that anything is unusual about him. Well, except maybe his infatuation with the NFL’s Washington Redskins. If you saw Mark walk across the street, you might think differently. A 43…
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Health Stories Project Bookshelf: Talking to Children about Grandparents

Did you know that grandparents make up more than one one-third of the adult U.S. population? With increased life expectancy and aging baby boomers, we have more grandparents in this country than ever before. And this is a good thing (a perhaps a…
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On May 31st, 1994, President Clinton signed National Men’s Health Week into existence. Why? Because men were dying, on average, seven years earlier than women. Because men were 150 percent less likely than women to visit a doctor for preventive care. And, finally,…
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Health Stories Project is about highlighting personal experiences to inspire and educate people about what it’s like to live with specific health conditions. Sometimes these experiences begin very early in life. A significant number of children and teens are affected by health issues…
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Mothering a Butterfly Child

Imagine your skin is so fragile that just rubbing it causes it to blister. And not just the skin you can see. Eating can cause the skin in your mouth and throat to blister as well. Sounds terrible, right? This is what life…
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When a family experiences a significant health event, such as illness, injury, or death, it has an impact on everyone. For children especially, it often leads to confusion and questions: Why are we spending so much time at the hospital? What are all…
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Looking back, Debbie finds her reaction to being diagnosed with melanoma pretty hard to believe. Only 28 years old at the time, she noticed a suspicious-looking mole on her right calf (it was asymmetrical). Her instincts told her that she should get it…
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