Dateline   |  January 06, 2014

'Breathless' part 1

Six-year old Amanda, who lives in Brownsville, New York and 12-year old Melissa, who lives in East Harlem, New York are struggling with the disease. Their parents, who are desperately trying to alleviate their suffering, and are about to make a devastating discovery.

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This content comes from Closed Captioning that was broadcast along with this program.

>> reporter: imagine living a life tied to a machine. imagine struggling for air as you play, walk or even sleep. imagine fearing that your next breath may be your last. welcome to the world of 6-year-old amanda santos .

>> i can't breathe. i can't breathe.

>> okay. all right. i know you're tired.

>> reporter: amanda is one of 7 million children in the u.s. who suffer from asthma . but there is something different about her disease. she and hundreds of thousands of others like her are more likely to develop, more likely to be hospitalized for, more likely to die of asthma than other children. i can't breathe i can't breathe

>> reporter: nearly a year and a half ago as part of the nbc news "in plain sight" initiative which reports on poverty in america and is supported by the ford foundation , i along with a team of "dateline" investigative producers set out to find out why those kids are more at risk, up close and undercover. and you may be outraged by what we discovered. i certainly was. because this is a story not just about asthma . it's about how the illness is made worse by neglect and incompetence in the very places where asthma rages most of all. i'm sitting in amanda 's apartment in new york at the kitchen table where time and time again she's been strapped to this medical device called a nebulizer, trying to ward off yet another asthma attack . and the painful truth is, it should have never come to this. for amanda 's mom, roseanna , it all began on a cold day almost two years ago when her daughter had her first asthma attack .

>> i got to the back, and that's when he told me, you know, he was, like, i don't want to scare you, but thank god you brought your daughter because she could have died last night.

>> reporter: do you remember the feeling of when you heard the word asthma for the first time? the doctor said, amanda has asthma ?

>> that's something that no parent wants to hear. none of my kids had asthma , so i didn't know what to look for.

>> reporter: roseanna works for a drugstore, but she and her husband, jose, were barely making ends meet. brownsville, an impoverished neighborhood in brooklyn where the family resides, was one of the few places in new york where they could afford an apartment large enough for their expanding family.

>> it was home.

>> reporter: and no matter what was happening outside --

>> once i closed my door, that was it.

>> reporter: it was a safe place , and no one could harm you.

>> exactly.

>> reporter: the everyday reality of dealing with amanda 's asthma changed all that. now the slightest cough sent her parents into a tailspin. so it's kind of a scary existence.

>> yes. here she is only 6, and she's sick. and she doesn't understand, and she doesn't know how she got it or why she got it.

>> reporter: amanda may not have understood why she got asthma , but she was quickly becoming a veteran in treating her own emergencies. we asked jose to document his daughter's struggle with the disease. so he pulled out his cell phone when a familiar sound woke him up at 2:30 a.m .

>> when i come out, i hear the -- the start of the nebulizer. she's, like, "i can't breathe." i said, "why didn't you call me?" "oh, because i woke you up last night and the night before, and i didn't want to bother you, so i came and did it myself." she's 6 years old. she should not know how to do her own medicine.

>> can i go get it and show you? this is the medicine that i've got to put on me. i open it and then i put it into here. and then i close it. and then i put this on. i turn it on, and it makes noise. i'm so scared. but my daddy says it's going to be all right. he says don't worry about a thing. everything will be all right.

>> reporter: but things were far from all right. not for amanda . and not for melissa sepulveda, a 12-year-old living in east harlem . her first asthma attack happened in the middle of basketball practice.

>> i felt like i couldn't breathe. i was suffocating. i didn't know what was happening to me. in my head i thought i was dying.

>> reporter: an asthma attack causes the small airways in the lungs to suddenly close. sometimes in response to an allergen, stress or exercise. but many times it's caused by triggers in the environment.

>> it feels like something's pinching or squeezing your heart.

>> reporter: and then when you try to breathe, what happens?

>> it just won't let you.

>> reporter: melissa 's dad, javier , was horrified. his daughter had developed a cough before the attack. but at first, he figured it was just a cold.

>> and it just became more persistent, more she was complaining about headaches and so we became more concerned.

>> reporter: javier works as a fire protection specialist at a local hospital. it's a good job, but raising a family in new york city is expensive. the family lives paycheck to paycheck. when money is tight, javier often works a second job to pay the bills. he prides himself on being a good provider and a u.s. air force veteran who helped protect his country during " desert storm ." but fighting asthma was a different challenge altogether.

>> put a plastic bag over your head for about 10, 20 seconds, and you would know what an asthma attack feels when someone has one. the inability to breathe, the panic, the fear that that creates in my daughter. she has this condition for the rest of her life.

>> reporter: and despite your best efforts, you couldn't protect her?

>> correct. and, uh --

>> reporter: it's your kids.

>> sorry.

>> reporter: it's your kids.

>> yeah.

>> reporter: javier and roseanna were wondering why our daughters. the answer, i was shocked to discover, was right in front of their eyes in the place they thought was their safe haven . their own home. imagine the place your children live, where they eat, play, sleep, making them sicker by the day. that was the case with both melissa and amanda . frightening. and when it seems no one cares, frustrating.

>> at this point, i was saying to myself, my child is sick. she could die. and no one is doing anything to help me. in