tonight, the cost of saving a life. one child's battle against a rare and deadly disease. >> i noticed she wasn't moving her legs. her legs did not move at all. >> will the most expensie drug in the world give her a chance? just how much will insurance companies cover? >> amount build, 6,193,647.16. >> a family's race against time to give their daughter a future. >> does it feel weird to you to put a price tag on something that seems priceless? >> this special edition of "nightline," the price of a miracle will be right back. rinsing the dishes before they go in the dishwasher? well, new cascade platinum has 50% more cleaning power,

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"nightline," "the price of a miracle" continues. here now juju chang. >> there's no sweeter sound in the world. a melody of pure joy. [ laughter ] the sound every parent loves to hear.

but for carrie and rory divine, those precious moments with their daughter reese interrupted. by the sound every parent dreads. the kind that hurts to hear. >> what's a 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 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. >> hi, donna. it's carrie divine. >> sometimes there is a jaw-dropping cost to saving a life. >> 6,193,647.16. >> using the most expensive drug in the world. does it feel weird to you to put a price tag on something that seems priceless? >> squeaker. >> it may be hard to remember, but the world reese divine was born into on the eve of 2020 was perfectly normal, just like carrie's pregnancy. what was in your heart when you held her for the first time? >> you're scared. you're excited. you're nervous. but overall you're overjoyed. >> 6 pounds, blue eyes. 10 finger, 10 toes.

>> you're so big. >> 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! >> what they did not know, what they had not yet come to suspect -- >> hi, sweet stuff. >> was that their beautiful growing baby girl was already losing ground. and to make everything worse, just three months after reese was born, covid changed everything. >> there is no comparisons for children because of the pandemic. >> the only other kids we saw were on instagram, and i would get frustrated. why is that baby-sitting up and he or she is two months younger than reese. >> reese's doctor diagnosed low muscle tone and put her in 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 milestone, don't worry. >> you pick her up and she slips right through your fingers because she's got no muscle tone. it's like holding a newbornewbor >> day by day lost ground, and day after day, carrie searched for answers, finally getting reese an in-person exam on may 27th. that day the pediatrician suspected a new diagnosis, three letters, sma. >> the first thing when you look it up on google, most infants diagnosed with sma type 1 do not live past two years of age. >> 90% mortality rate by age of 2. >> i just cried. i can't lose her. if we lose her, i'm -- i don't know what i'll do. >> sma stands for spinal muscular atrophy, a genetic disease passed on only when both

parents are carriers. it affects the central nervous system, specifically the motor neurones in the spine, which impact all the muscles in the body. over time, those motor neurones weaken and die off, causing muscles to lose strength. >> people with sma lose the ability to walk, to sit up even, to swallow, and to breathe. >> carrie and rory ended up at ucla with neurologist dr. perry shea, who confirmed the diagnosis. how come it's so tricky to diagnosis? >> typically these babies when they're born, they look essentially normal. >> i think pediatricians are often fools because 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 had almost come to terms with the fact that this will destroy us. no couple can survive the loss

of their first kid. >> you know, every now and then we'll go for walk, and i'll see kids running around or on their scooters, and it kind of hits me a little hard because i know she'll probably never do that. >> what do you think, reesy. are you going to go back to sleep for momma? >> luckily, there are new treatments, but they're incredibly expensive. once you got the diagnosis, what was the race against the clock like to get the treatment? >> we had started to notice she was declining pretty quickly. >> the first thing they tried, a drug called spinaroza, the first ever approved for sma. >> it sent a lightning rod through the neuromuscular community. having a treatment was a total game changer. >> 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.

>> it's called zolgensma. it targets the genetic root of sma, that missing or mutated gene. it delivers a corrected version, helping the motor neurones function properly. the one-time dose costs $2 million. >> i said to maria, we'll do whatever it takes to get it. i said i would sell my organs. >> we immediately went to organ selling. carrie went to this is what we're doing. we're selling our organs. what are you talking about? >> the cost of it didn't matter. whatever it took, we were going to get our daughter this medication. >> zolgensma is only for kids under the age of 2. the thing is, the earlier you get it, the better it works. it's so good, if a baby is treated right after birth, they could live a relatively normal life. >> the timing is critical. if sma is suspected, it's an eergency to figure that out. >> 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 time consuming. >> do you know about how long it will take? because i think -- >> i spent just all day every day on the phone. my baby needs this medication. >> carrie's desperate and relentless appeals win out. >> crazy. like she has no idea that tomorrow is 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. >> little reese, now close your sweet eyes. >> it's been 65 day since her official diagnosis. reese is now eight months old. >> now we just have to sleep, which will be the hardest part. >> probably won't be getting much sleep tonight. >> hi ya, sweetheart. good morning. are you excited for today?

>> the new day dawns. tinged both with optimism and a dose of nerves. >> we're here, i think. are you ready to go? she looks nervous. >> the family checks into ucla for the zolgensma injection. >> starting to get a little nervous. maybe it's not here. i expected to arrive in >> it's in a brown bag, in a brown bag. >> it's got to be worth its weight in gold. >> the largest syringe i've ever seen either, comically large. >> the syringe. >> oh, boy. that's a big guy. >> it's a big syringe.

>> once they started it, and you can see the syringe depressing, it was the biggest weight lifted off my shoulder, both of our shoulders. you know, we were just so grateful that she was finally getting this medication. >> it's a slow injection process. reese takes it all in stride. >> i love you too. >> now it's time to go home and wait to see if it works. up next -- >> turn around again. whoa! >> parents demanding to know why every newborn baby isn't tested for this dangerous disease. nicorette knows, quitting smoking is freaking hard. you get advice like: just stop. get a hobby. you should meditate.

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"nightline," "the price of a miracle" continues. here again, juju chang. >> in addition to blocks and snack time, this is little reese divine's daily routine. >> reesy! oh, how you doing, reesie? >> does that feel good? >> 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 neurones in their daughter's spinal cord. >> she is such a brave girl. she didn't even cry when i put the iv in. >> they're waiting to find out

if the most expensive drug in the world, worth $2 million will help save her life. >> it's a couple days after infusion, and reese is just having a crumby day. kind of just sucks. and i just feel bad that i can't help her. >> 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. >> 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! >> she also relied on a facebook group for sma parents. >> my name is karen. i'm a mother with a type 1 spinal muscular atrophy. >> my husband and i have two

kids. >> our daughter hayden has spinal muscular atrophy. >> diagnosed with sma type 1. >> 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. >> 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 50 states because it will give children a much better life than they otherwise would have. >> 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 less than 1% chance of anything happening. that happened. >> it's just so frustrating that now there is treatment. if this was caught when reese was born, her life would look a lot different now. >> 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 build, 6,193,647.16. >> the drug alone zolgensma cost $2 million. why is it so pricey? novartis, the company behind the drug says it only costs about half of what a family would otherwise spend on treatments over a decade. as far as what families actually pay, the company says nearly all its u.s. patients are covered by insurance. when did you start seeing those tantalizing signs that wow, this

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

>> just the three of them. ♪ happy birthday to you. >> she has made some wonderful gains. she is lifting her arms up more. she is lifting her legs more, breathing better. i'm quite optimistic. >> coming to see what the doctor doing out here? >> by the beginning of 2021 -- >> look at you! >> reese had gained some new mobility thanks to her first wheelchair made out of those popular bumbo seats. >> good job! >> do you feel like she'll graduate from wheelchair some day? >> 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 and have some independence. >> that hope may be closer to reality than carrie realized. reese is learning what it means to be on her own two feet thanks to special bouncer, shoes and leg braces. >> there she goes. >> there is also a specialized

mchine that helps her stand for longer periods of time. >> good girl! >> 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, though, reesy! look at you, reesy. >> what are your hopes and dreams for reese? >> just hope she stays as happy as she is now. >> my uncle caught me one time when i referred to it as a tragedy. he said it's a challenge, not a tragedy. that stopped me. that's something i have to remember all the time. reese is such an amazing little kid i think this kind of happened for a reason. >> i just have to keep telling myself that's why we were chosen to be her parents, because, you know, we're going to give her the best life possible. >> we'll be right back.

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>> can you come to momma? come on! three! come on.