Girl, 7, Dies on Family Vacation After Complex Medical Journey. Now Her Parents Are Changing Lives in Her Honor (Exclusive)

The Taylors are helping medically complex kids get everything they need to live their best lives, in honor of their late daughter Ariana

• Lauren and Jason Taylor welcomed daughter Ariana at 26 weeks in January 2017

• After months of medical trials, the family learned Ariana was living with spastic quadriplegic cerebral palsy

• Throughout the 7-year-old's life and up until her death in April 2024, the couple tried to give Ariana the best quality of life possible, and now they're helping other families do the same
  

A mom devoted to giving her medically complex daughter everything she could is now hoping other children can enjoy all those experiences and more.

Lauren Taylor was pregnant with daughter Ariana in late 2016. Halfway through her pregnancy, Lauren began experiencing swelling in her ankles, traveling up her calves. Despite her best efforts to combat the swelling, Lauren decided to consult a doctor when it persisted, noting a family history of preeclampsia.

"They weren't worried, at first," Lauren tells PEOPLE. But by 25 weeks, Lauren could barely muster the energy to take her weekly pregnancy progression photos. That same week, she woke up to find her face starting to swell.

"It was such severe swelling that I couldn't even wear my regular clothes. My belly wasn't very big, but my legs were so swollen. When I slept, my hands would swell and would be stuck shut. It just seemed unusual."

Then, at the start of her third trimester, Lauren started having contractions.

"I didn't know they were contractions. I worked the whole shift and then went home. I was telling my husband, I'm in a lot of pain, I'm hurting, and I think they're contractions, but that can't be because I'm 25 plus six.' "

Lauren's husband offered to take her to the hospital, but she assumed she was experiencing Braxton Hicks. Moments later, she began hemorrhaging and experiencing contractions just 30 seconds apart. By the time she got to the ER, she was covered in blood.

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"I just remember those moms looking at me in the lobby with ghostly looks on their faces," she says. "They finally put me in the room and started running the tests."

Doctors found that Lauren's baby had a heartbeat. They tried to take measures to keep her from delivering, but ultimately, they wouldn't wait long. Lauren delivered Ariana via emergency cesarean section at 2:27 a.m. on Jan. 30, 2017, at 26 weeks.

"The doctor told me, 'If she's breathing at all, I will show you baby,' but then I never got to see baby. She didn't show me because she wasn't breathing. So she had to be resuscitated and moved into the highest critical care area, a level three NICU."

The birth experience was "traumatizing" for Lauren, who was diagnosed with "atypical preeclampsia that caused a placental abruption."

"The placenta was tearing away from the uterus, which caused the hemorrhage," Lauren explains. "Many moms die that way because you lose so much blood. I'm very lucky that I didn't have any seizures or strokes or lose enough blood to pass. A lot of babies die that way, too, so we were both very fortunate in that we made it."

"Most people would say that the best day of their life is when they have their child and that was not the best day of my life. That was one of the worst days of my life because I was so worried. I was so scared. I had a lot of grief around her birth, and I have a lot of guilt around her birth."

Ariana spent 117 days in the neonatal intensive care unit (NICU), recovering from her brain bleed and other issues. However, it was just the beginning of a complicated and nuanced medical journey.

"They were very hopeful and optimistic, so we tried to follow suit. There was no clear signs that she'd have the disabilities she ultimately was diagnosed with, but it was a very turbulent NICU stay. She had fractured ribs from the birthing process," Lauren explains. "She had to get a PDA ligation, which is heart surgery because she had a murmur that they needed to close. She had some bad days around that. She couldn't control her blood pressure appropriately, so that was scary."

Concerned about Ariana's sight due to stage three retinopathy prematurity, the baby had to undergo "this exam where they put a device in your eye that pushes your eyeball out so the doctor can look behind it and see how the vessels are moving."

Ultimately, doctors told her that Ariana was doing okay. She wasn't out of the woods, but they were hopeful she'd retain some sight.

"It was one step forward, two steps back, so we were taking every win as a huge win. But that same day, she failed all her hearing tests, so then we were concerned about hearing loss," Lauren says. "So she did have a condition called auditory neuropathy spectrum disorder (ANSD), and it's a condition where the cochlea does not connect to the brain stem appropriately."

Ariana also struggled with breathing around feedings while in the NICU. Though they didn't know it at the time, "Ariana's reflux would be her demise throughout her seven years of life."

The reflux stood in the way of Ariana graduating from the NICU. They worked on it while she also started physical therapy and occupational therapy. It was through this process that doctors informed Lauren that Ariana had "no head control," a significant milestone.

"What I didn't know at that time was that missing your first motor milestone is the first sign of cerebral palsy," Lauren says. Even after Ariana graduated from the NICU, Lauren and her husband Jason were left "unclear about her disabilities."

Also during this time, Lauren's insurance company connected her with different programs that would help ease the costs as they pursued answers for Ariana. Lauren also adjusted to becoming a caretaker at that time.

"My husband continued to work and take care of everything there. We were able to afford to do that because we lived in a small house in Las Vegas under our means. We were very fortunate I didn't have to go back to work and was able to take Ariana to all her therapies."

To deal with this new reality, Lauren began documenting their story. Later, she began to share it on social media.

"I started taking photos of Ariana and started making videos for myself at home. It really helped me cope during the NICU days and everything that came after. I didn't start social media then, but it really helped me personally to go home and be like, 'What can I make of her day today? I really want to make a video of what we did today.' "

She continues, "I was really excited to do those videos for myself, and that's how I later ended up starting her social media account because it helped me cope with grief."

Once Lauren and Jason got Ariana's cerebral palsy diagnosis, they had more direction.

"A diagnosis does not change your child. A diagnosis is what helps you get the therapies and the equipment you need for your child to have a better quality life. So yes, diagnosis day was scary for me, but having a formal diagnosis didn't change who she was. It just changed the care that we were able to get her."

Lauren got used to the medical team needed to manage Ariana's conditions. In addition to physical and occupational therapy, there was an ophthalmologist, a cardiologist, a neurologist, an audiologist, an ENT, an orthopedist and a number of developmental specialists.

"It was full-time, taking Ariana to doctor's appointments each week, but it's what we did ... It's just not what I expected to have and it took me a long time to say, 'How am I going to handle this? What am I going to do?' I didn't know what to do or how to parent a child with typical needs, let alone these complex needs."

As they prepared Ariana's care and equipment, they recognized the exorbitant costs that went along with that.

"The first six months, we didn't need equipment but around a year, we knew we needed things to help Ariana sit up on her own," Lauren explains. Her research brought her to a tomato chair, which wasn't covered by insurance.

"If Ariana didn't have a chair to sit in, she literally could not sit," she continues. "She wants to watch TV and we need to feed her and do activities with her, so she can be part of things."

"We found other places to get grants. Once we had it, we quickly learned the tomato chair was the most important piece of equipment for us. Still, insurance does not deem it necessary."

It didn't end there. Bathing Ariana, who wanted to start doing it on her own, became difficult and dangerous. Bath chairs were also not covered by insurance.

"There's also a tomato chair stroller because a wheelchair gets so heavy to lift up and down, especially if you don't have a car appropriate for a wheelchair. It's hard to travel with a wheelchair, but again, not every family can just go out and get an $800 stroller," she says.

The situation inspired Lauren and Jason to start the Ariana Rye Foundation in 2019. At the same time, they were working on opening their brewery, Nevada Brew Works.

"We wanted to have food and have it be a whole restaurant that allows kids," she says. "In September 2020, we opened our brewery. I told Jason, 'Let's raise money through a beer and donate it to a foundation, so we can get a constant stream of income and make sure we get these kids what they need.' "

Lauren continues, "We have a beer at the brewery called the Ariana Rye IPA. It's on tap year-round and we donate money from each sale to the foundation. Then we put a different child 'on tap,' and raise money specifically for their needs."

"Right now, we have Quinn IPA raising money for Quinn's equipment. For Quinn, who is also local to us, she has a genetic abnormality, so I'm not sure exactly what she wants yet but the beer's proceeds will go toward whatever she needs."

Through their experience with Ariana, Jason and Lauren learned the importance of specialized equipment and how it can help improve quality of life.

"Every beer that's sold from that goes to the foundation as a generalized sum, so we donate money from that to other kids. Every quarter, we pick a child to put on tap and the money from that beer will go to them," she explains. "Our foundation donates $1,000 per child on average, but when they're on tap, we can bump it up and get them some of that higher-end pieces of equipment, which can be quite expensive."

They've also had the pleasure of meeting some of their on-tap kids, like Bailey, who was born with cerebral palsy caused by meningitis.

"We got Bailey two car seats that rotate. It's really important because these kids can't get themselves in or out and it gets difficult as they start getting bigger. It's nice when they can rotate towards the parents, especially if they need equipment to get around."

Lauren notes, "Jason and I don't take any money out of the account for ourselves. We don't take a salary. Every dollar that comes in goes for these kids. We don't want the money. We want all the kids to get every single dollar."

"We do it because we love these kids and we love Ariana so much that we wanted to help other kids like her. The work continues and it's more important than ever to continue her legacy."

As the foundation started its work, Lauren and Jason continued enjoying time with Ariana.

"It became almost a game to us, like, 'Ariana, the world thinks you can't do anything. Let's show them what you can do.' I wanted to show the world Ariana could enjoy things the way we did," she says.

"There are places that are accessible that you wouldn't think are. I wanted her to be able to do all the things that other kids can do. There was once a time, years ago, when people used to institutionalize these kids, and they used to be in bed all day, not doing anything. And I want to share that that's not life anymore."

"We can go to therapy, we can do things — we just do things differently. It's been quite the journey trying to get to the place where we were," she says, looking back at memories they shared.

"She'd get excited just like any other 7-year-old. People may look at our children like they're different, but they're just kids who have a different way of doing things."

The mom of two says, "I love Ariana and her community. I wanted to do everything to give Ariana the best quality of life, and I also want to do everything I can to give other kids the same, if I could possibly do that."

The family enjoyed seven years of memories with Ariana, who died on Sunday, April 28, during a family trip to Florida.

"We are struggling. We miss her so much," Lauren says. "Life is not the same, and grief isn't linear. It goes up and down. I feel empty. I feel sad. I really have built my life around Ariana."

Lauren feels a shift in her purpose coming. "It was everything to give Ariana the best life, and now I feel empty. I know she was my purpose, and I was put here to help. She was my light, and that's why I want to share her with the world. She was so special," she says.

"I went through so much grief when I got her, and I went through so much grief in trying to cope with her diagnosis. This grief is nothing comparable to what I went through previously. I just wish I had her back."

Moving forward, the bereaved mom hopes to "use the time I used to devote solely to Ariana on our family. I want to nurture myself, my husband and our daughter Kyra, but also spend some of that time progressing the Ariana Rye Foundation."

"I want to help these kids even more because we want to give these kids a better quality of life. It has become so true that we don't know how long they have on this earth," she says.

The journey has been "life-changing" for the family of four. Lauren says, "Having a child with a disability, no matter how mild or severe, changes everything."

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