with music from lake street dive. "nightline" is next. thanks for watching. goodnight. tonight, the cost of saving a life. one child's battle against a rare and deadly disease. >> i noticed she really wasn't moving her legs. her legs did not move at all. >> will the most expensive drug in the world give her a fighting chance? just how much will insurance companies cover? >> that says amount billed, $6,193,000. >> does it seem right to put a price on something that's this priceless? >> the price of a miracle will be right back.

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hear. but for carrie and rory devine those precious moments with their daughter reese interrupted. by the sound every parent dreads. the kind that hurts to hear. >> what's the matter with us today, reese? why are you so sad? >> i just can't figure out what's wrong with her today. >> this laid-back california mom and dad suddenly on a frantic search for answers, trying to unravel a medical mystery sitting right in front of them. and the answer could save countless other babies. >> i was holding her on my lap and just started crying, and like saying i'm sorry, i'm sorry. >> why would you say "i'm sorry"? >> you just can't help but feel like it's our fault, you know.

>> a rare genetic disease. and time is not on their side. >> do you know about how long it will take? >> it's a journey exposing cracks in our medical system. examining why sometimes there's a jaw-dropping cost to saving a life. >> 6, 193, $647.16. >> reporter: using the most expensive drug in the world. does it feel weird to you to put a price tag on something that seems priceless? it may be hard to remember, but the world reese was born into on the eve of 2020 was perfectly normal, just like carrie's pregnancy. what was in your mind when you held her for the first time? >> you're scared, nervous, but overall overjoyed. >> reporter: six pounds, blue

eyes, ten fingers, ten toes. >> you're so big. >> reporter: carrie and rory, like so many first-time parents falling in love while getting the crash course in life with a newborn. >> oh, my god! >> reporter: what they did not know, what they had not yet come to suspect. >> hi, sweet stuff. >> reporter: was that their beautiful, growing baby girl was already losing ground. and to make everything worse, just three months after reese was born, covid-19 changed everything. >> there's no comparisons for children because of the pandemic. >> the only other kids we saw were on instagram, and i would get frustrated. i would be like oh, why is that babysitting up and he or she is two months younger than reese. >> reporter: reese's doctor diagnosed low muscle tone and put ner physical therapy. but instead of getting better things kept getting worse. >> i noticed she really wasn't moving her legs. her legs did not move at all.

>> consistently hearing from the doctors, just low muscle tone, slow development. she'll get to her milestones, don't worry >> you pick her up and she slips right through your fingers because she has no muscle tone. it's like holding a 19-pound newborn. >> reporter: day after day, reese lost ground. and day after day, carrie searched for answers, finally getting reese an in-person exam on may 27. that day the pediatrician suspect add new diagnosis. three letters. sma. >> the first thing when you look it up on google is most infants diagnosed with sma type one do not live past 2 years of age. >> 95% mortality rate. >> i just cried. i said i can't, i can't lose her. if we lose her, i'm, i don't know what i'll do. >> reporter: it stands for spinal muscular atrophy, a

genetic disease passed on only when both parents are carriers. it aff the central nervous system, the motor neurons in the spine which affect all the muscles in the body. over time they die off, causing muscles to lose strength. >> people with sma lose the ability to walk, to sit up even. to swallow and to breathe. >> reporter: carrie and rory ended up at ucla with dr. perry shay who confirmed the diagnosis. how come it's so tricky to diagnose? >> typically, when they're born they look normal. >> these babies are bright eyed, engaging. they smile at you. they look at you like they know something that you don't. >> reporter: reese not only had sma, she had one of the most severe forms. >> when we first got the diagnosis and we weren't sure if she was going to be alive, i'd almost come to the fact this

will destroy us. no couple can survive the lost of their first kid. >> every now and then we'll go for walks and i'll see kids running around or on their scooters and it hits me hard because i know she'll probably never do that. >> are you going to go back to sleep for mama? >> reporter: luckily, there are new treatments, but they're incredibly expensive. o once you got the diagnosis, what was the race against the clock like? >> she was declining pretty quickly. >> reporter: the first thing they tried was a drug called spin rosa, the first drug everle for sma. >> it sent a lightning rod through the community, having a treatment was a total game changer. >> reporter: each injection which goes right into the spine costs about $90,000. and a patient can take them every four months for the rest of their lives. those injections bought reese precious time. while they waited to qualify for a new breakthrough drug. >> unfortunately, it's the most

expensive drug in the world. >> reporter: it's called zolgensma. it delivers a corrective version helping motor neurons function properly. it costs $2 million. >> i said to rory, you know, we'll do whatever it takes to get it. i said i would sell my organs. >> immediately went to organ selling. carrie immediately went to, this is what we're doing. and i was like, what are you talking about? >> the cost of it didn't really matter, whatever it took, we were going to get our dot are the medication. >> reporter: the earlier you get it the better it work. if a baby is treated right after birth they could live a relatively normal life. >> if sma is suspected, it is an emergency to figure that out. >> reporter: carrie and rory are both working full time. both recognize that they have the privilege of health

insurance. still, the approval process is complicated and teime-consuming. >> i spent just all day every day on the phone. and i'm like, my baby needs this medication. >> reporter: carrie's desperate and relentless appeals went out. >> it's crazy, like she has no idea that tomorrow's like the biggest day of her life. we got some good news today. reese's treatment has finally been fully approved. >> and we still don't know what the final cost is going to be on our end. >> goodnight, little reese, now close your sweet eyes. >> reporter: it's been 65 days since her official diagnosis. reese is now 8 months old. >> now we just have to sleep, which will be the hard els part of this entire thing. >> probably won't be getting much sleep tonight. >> hi, sweetheart. good morning!

are you excited for today? >> reporter: the new day dawns. tinged with optimism and a dose of >> we're here. are you ready to go? she looks nervous. >> reporter: the family checks into ucla for the zolgensma injection. >> i'm a little nervous. i expected to arrive in diamonds. right now it nasa's in a brown . >> reporter: it's got to be worth its weight in gold. >> it was the largest syringe i've ever seen, comically large. >> the syringe. >> oh, boy, that's a big guy. >> yeah, it's a big syringe.

>> once they started it and you could see like the syringe depressing, it was just like the biggest weight lifted off my shoulder, both of our shoulders. you know, we were just so grateful that we're finally getting this medication. >> reporter: it's a slow injection process. reese takes it all in stride. >> i love you, too. >> reporter: now it's time to go home. and wait to see if it up next. >> show me how you can turn around again. whoa! >> reporter: parents demanding to know why every newborn baby isn't tested for this dangerous disease. in our home, we trust dawn antibacterial. it cuts through tough grease with 50% less scrubbing... so our dishes get cleaner, faster.

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"nightline" "the price of a miracle", continues. here again, juju chang. >> reporter: in addition to blocks and snack time, this is little reese devine's daily routine. >> reesy! oh! how are you doing, reesy? >> do you feel good? >> reporter: carrie and rory's california home is littered with toys and medical equipment, the effects of having a baby with sma. the rare genetic disease slowly killing the motor neurons in their daughter's spinal chord. >> she's such a brave girl.

>> reporter: they're waiting to find out if the most expensive drug in the world, worth $2 mill her life. >> it's a couple days after infusion, and reese is just having a crummy day. and it just sucks, and i just feel bad that i can't help her. >> reporter: were you nervous that it might not work? >> i don't know if we were nervous that it wouldn't work. i never kind of let myself think that. >> reporter: as the couple waited to find out if zolgensma works for reese, carrie continued to document the highs and lows on social media. >> look at you go, reese. >> reporter: she also relied on a facebook group for sma parents. >> my name is erin, and i'm a mother to emma. she is a 4-year-old with type one spinalhy. >> my husband and i have two

kids. >> our daughter hayden has spinal muscular atrophy. >> diagnosed with sma type one. >> reporter: many of these parents had no idea what sma was until it happened to their child. >> my daughter was born before any treatments were available, and she was never able to sit, stand, walk or talk. >> i wish that we never knew what it was. and that this wasn't our story. but it is our story. >> reporter: because time is so crucial, many are now calling on states to make sma testing mandatory at birth. >> there has been such an enormous advancement in treatment over the past three years. >> we hope that newborn screening becomes the norm in all give children a much better leave than they otherwise would have. >> reporter: so far only 36 states have mandatory screening. 14 do not. nationwide more than a quarter of newborn babies are not

tested. california enacted its mandatory testing six months after reese was born. >> i just think back to the doctor telling me that you don't have anything to worry about. you're a less than 1% chance of something happening. >> if this was caught when reese was born her life would look a lot different now. >> reporter: during this time, the couple also started learning the real cost of the drug and reese's hospital treatment. >> i mean it clearly says at the top this is not a bill, thank god, but it says amount billed, 6,147,000, $000. >> reporter: novartis says it only costs about half of what families would pay. nearly all the u.s. patients are covered by insurance. when did you start seeing those

tantalizing signs that, wow, this thing's working? >> like day three, she actually lifted her head up. >> oh, my goodness! >> okay, so why are you crying? >> well, today reese has started sitting. unassisted. see if i can let her go. and this is just, it's a really big deal. just really grateful. >> reporter: i've seen video where she turns over from her side onto her back for the first time. and i hear you guys rooting her on and celebrating. >> whoa! >> reesy! >> i mean anytime she does anything, it's a celebration. you know, i feel like we want to throw a party. >> reporter: they did get to throw reese a party, her first birthday, pandemic style. ♪ happy birthday deareesy ♪

>> reporter: just the three of them. >> she's made some wonderful gains. she's lifting her arms up more than when i first met her. she's lifting her legs up more. she's breathing a bit better. i'm quite optimistic. >> coming to see what the dogs are doing out here? >> uh-huh. >> reporter: by the beginning of 2021 reese had gained some new mobility thanks to her first wheelchair, made out of those popular bumbo seats. do you feel like she'll graduate from wheelchairs someday? >> realistically, she'll probably have a wheelchair as her primary mode of getting around. it's my hope that she'll be able to walk and take steps anha independence. closer to reality than carrie realized. reese is learning what it means to be on her own two feet, thanks to special leg braces. >> there she goes.

>> ror ze tt helps her stand for longer periods of time. >> good throw! >> reporter: but the biggest milestone happened at the end of february, when reese stood all by herself. for three whole seconds. totally worth it. >> that was good, reesy! >> look at you, reesy. >> reporter: what are your hopes and dreams for reese? >> just hope that she stays as happy as she is now. >> my uncle caught me one time when i referred to it as a tragedy and he stopped me, and he said it's a challenge, not a tragedy. that's something very to remind myself all the time. reese is such an amazing little kid, that i think this kind of ha for aean. that's why we were chosen to be her parents because we're going to give her the best life possible. >> reporter: we'll be right back.

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