Thursday, April 24 2014 3:47 PM EDT2014-04-24 19:47:30 GMT
The federal government wants to ban sales of electronic cigarettes to minors and require approval for new products and health warning labels under regulations being proposed by the Food and Drug Administration.More >>
The federal government's move to regulate e-cigarettes is a leap into the unknown.More >>
Morgan looks like any other 8-year-old, but she's battling a lung disease that
fewer than 200 people around the world have been diagnosed with.
just seemed to work really hard at breathing, but she still looked healthy,"
said Michelle Morgan, Maddie's mother.
was like that from the minute she was born, but everything else seemed normal,
then started to lose weight," Michelle said. "She was not gaining weight
because she was using so much of her energy to breathe."
11 months old, Maddie was hospitalized with pneumonia, but her CT scans and
X-rays did not look right. After numerous misdiagnoses, the Morgans started
doing their own research.
wasn't until she was three years old that Maddie was diagnosed with neuroendocrine
hyperplasia of infancy, or NEHI.
traps air," explained Michelle. "Sometimes the alveoli in her lungs hold stale
air, and when that happens, she is not able to completely let go of all the bad
air and then inhale a fresh breath of air."
is no real cure for NEHI at this time, but for Maddie, sleeping with oxygen
helps. And it keeps her active. She plays soccer and does karate.
like how my coaches are always tough on me, even though I have it," Maddie
said. "They still know if I need a break, I need a break."
and her older sister Mackenzie are also raising awareness and money to make a
difference. It started as an idea to make money at a neighborhood garage sale.
have rainbow loom kits that make bracelets out of little rubberbands, and we decided
we'd do that," Mackenzie said. "Then I decided that maybe we could do it for a
fundraiser to raise money for her lung disease."
sold the bracelets for 50 cents, but once word got out why they were selling
them, the donations came pouring in. Now the two sisters are donating more than
$500 to research.