Lily Lachman ‘just loved life’

“Talk less. Smile more. Don’t trust people that act like they care.”

These words of wisdom were written not by a famous 19th-century poet, a Greek philosopher or a Shakespearean playwright.

These are the words of a teenage girl from Kenosha, one who was sorting out the thoughts and feelings typically born from teenage angst.

They are the words of Lily Lachman, who loved writing, art, music, movies and making people laugh, sometimes with a bit of a dark sense of humor. Lily had a lot of goals and dreams in life. She wanted to move to New York and travel to Paris. She wanted to become a child life specialist, an autism behavioral therapist, an artist and a music teacher.

“She had a lot of life to look forward to,” says Lily’s mom, Nicole Visintainer.

More than anything, Nicole says, Lily just wanted to be “normal,” whatever that is.

Especially during our formative teenage years, we all grapple with our identities. Who are we? Who are our real friends? What do we want from life? How do we figure out how to like ourselves while wanting to be liked by others?

Like most teenagers, Lily Lachman also grappled with these questions. But unlike most teenagers, Lily had a far more serious question hanging over her head.

Would she even live long enough to figure it all out?

Less than a month after her seventh birthday, on Feb. 27, 2016, Lily received a heart transplant. Though the transplant went well and extended her life, like any major organ transplant recipient, Lily – and her family – knew she would be living essentially on borrowed time.

Unfortunately, Lily went into heart rejection in the summer of 2022. She battled courageously for over a year, even receiving a clean biopsy this past June. Unfortunately, due to complications for reasons the family is still unsure about, Lily died on Aug. 15, 2023, at the age of 14.

Though her life was cut short before she reached 15, Lily packed in a lifetime of memories and activities and left an indelible mark on her family, friends and all those who knew her.

What really makes Lily’s journey so beautiful and inspiring, as her mother tells it, is that it was just so … real. She exuded both the pain and the beauty of her too-short journey on this earth. She was equal parts scared and brave as she grappled with the reality that she really could die, a reality that’s unfathomable to almost all humans, especially ones who are just 14 years old. 

And Lily’s family shared in all of it, from the heartache to the love to the confusion, the ups and downs, the good news and bad. 

This was not a Hollywood script. It was real life.

Nicole Visintainer says this is the best way to describe her daughter’s life: “Her life consisted of 14, almost 15, chapters, and not only did she write her own story, but we all helped her add to it. And in the end, it turned out to be a story full of twists and turns, beauty and sadness.”

There is probably only one goal that it’s safe to say Lily didn’t achieve: to be “normal.” Because her life was so much more rich and powerful than merely “normal.”

This is Lily Lachman’s story, as told by her mother.

Large family

You could not say that Lily lacked love or had little family during her life.

By the time of her passing, Lily counted seven siblings between her “natural” families and her step families, ranging in age from 20 to one-and-a-half. Those were brothers Gage Keller and Oliver Bella and sisters WeathyrAnn Bella, Aubrey Visintainer, Talia Bella, Willow Visintainer and Piper Visintainer, all of Kenosha.

Lily’s mom and stepdad, Nicole and Tom Visintainer, and her dad and stepmom, Dan and Lisa Bella, made her feel at home no matter what roof she was under.

“She had four families, extended family and a lot of friends who loved her,” Nicole said. “… She had an amazing relationship and a typical teen/parent relationship with all of us parents.”

Born on Feb. 3, 2009, Lily’s life seemed pretty typical, albeit with an atypically large family. But that all changed in 2015.

In October of that year, Lily became very ill while playing at a trampoline park. Understandably, her family figured she was just tired and over-exerted, but her illness lingered. So on Nov. 15, 2015, she was taken to a walk-in clinic, where she was diagnosed with something like a sinus infection.

But weeks later, on the day after Thanksgiving, Lily was still very sick.

“She was really lethargic, laying on the ground, puking,” Nicole said.

This elicited a visit to the emergency room and X-rays, upon which Lily was diagnosed with an enlarged heart. However, Nicole said, she was told this was commonly seen in kids suffering from bronchitis, so Lily was merely sent home with an inhaler.

“My kid’s miserable, it’s midnight,” Nicole recalled of that frustrating ER visit. “… So we just wanted to get home. So that Monday I called her pediatrician, and her pediatrician said, ‘Yeah, bring her on in.’”

The pediatrician made an appointment for Lily to get checked out at Children’s Hospital in Milwaukee later in December, but she didn’t even make it to that point. On Dec. 1, 2015, while at her dad’s house, Lily threw up again right after eating, so she was taken back to the ER at St. Catherine’s in Kenosha.

Her heart was failing.

“Within not even an hour of being there, we found out she had 20 percent of her heart functioning, that she was in heart failure,” Nicole said. “So they rushed us up to Children’s. It took a good week for them to get their bearings and figure out things. They were trying to give her medications to reverse it.”

By this point, though, there was only one option. Lily was placed on the heart transplant list.

Her family was obviously left wondering what caused Lily’s heart to fail from an illness that just seemed to be like a bad cold or a flu. It turns out, Nicole says, the answer was in genetics.

“We did genetic testing with her when I was pregnant. Nothing,” Nicole said. “And so they did genetic testing while they were up there (at Children’s). … They thought it was myocarditis. And then it turns out it was a TNNT2 mutation (a gene that provides instructions for making the protein cardiac troponin T, found solely in the heart muscle), brought on by dilated cardiomyopathy. 

“So basically, a virus attacked her heart (and) brought out this fluke genetic mutation that was in her system. So it was in her body, like a ticking time bomb.”

Since this happened to Lily, Nicole says, they’ve read stories and even met two other kids who were thrown into heart failure by a similar genetic mutation.

“Right now, my goal is to fight for Lily and fight for all these kids,” Nicole said. “There has to be better genetic testing that they can do to determine this from day one.”

Stroke, heart transplant

At the end of December 2015, now on the transplant list, Lily developed blood clots in her heart. They were removed and she was put on a VAD (ventricular assist device) machine, which kept the left side of Lily’s heart pumping while she waited for a new one.

On the day before her seventh birthday, Feb. 2, 2016, Lily suffered a stroke, which caused left-side paralysis that persisted for the rest of her life.

“They don’t know what caused it, if it was the blood clot that was left that went to her brain, or if it was the medication she was on, or it could’ve been a VAD,” Nicole said. “So they don’t know. But it left her with left-side paralysis. 

“She gained most of her walking strength back, but she didn’t have the use of her left arm. She never regained that back.”

Because of the stroke, Lily’s status on the transplant list had to be stalled. But she was put back on it once her status was figured out. Then, on Feb. 26, 2016, her family received the magical – and terrifying – call that a heart was found for Lily and she could undergo the transplant surgery.

Nicole recalled the feeling when Lily was going through her “transplant walk” into surgery at the Children’s Hospital of Wisconsin’s Herma Heart Institute.

Lily’s family did not know if she would ever come back from the surgery.

“It was like walking behind the casket,” Nicole recalled.

The surgery lasted almost nine hours, during which Lily’s family was kept as busy as possible to keep their minds occupied. This included moving stuff out of Lily’s hospital room to the nearby Ronald McDonald House of Eastern Wisconsin, which gives families of seriously ill children being treated at Children’s Hospital of Wisconsin a welcoming place to stay.

“Her nurses kept us busy the whole time,” Nicole said. “We had to get everything out of her room … (and) take it all over to Ronald McDonald House. So her dad, stepmom and I did that. We took a little nap at Ronald McDonald House. We got food, and then I remember that evening, we went back and we waited. We got to follow it step-by-step on the phone. They sent us text messages.

“ … So it was a very long day.”

Finally, Dr. Ronald K. Woods of the Herma Heart Institute emerged with the good news.

“I just remember when he came, and he said, ‘The heart is beating beautifully,’” Nicole recalled. “I just hugged Dr. Woods. I just squeezed him. I’m like, ‘Can I hug you?’ 

“And I’m not a hugger. But I hugged him.”

Teenage years

Following the successful heart transplant, Lily proceeded with her life, into her teenage years.

Those did not prove to be easy, which is often the case for teenagers and the families dealing with their angst.

“She became very ‘teenager-ish,’” Nicole said.

But Lily, of course, was dealing with more than other teenagers. Because of the heart transplant, Lily was on lots of medications to prevent her body from rejecting her new heart. Among them was prednisone, which, as Nicole says, “makes you poofy.”

Lily still had left-side paralysis from the stroke. Combined with the medications that may have made her appear “different” as she entered high school at Harborside Academy, Lily sadly became a target for teenage teasing and bullying. Even from those who knew she had a heart transplant.

“She went through a lot of mental health issues in her 14th year, as she turned 14,” Nicole said. “… She was getting frustrated. I mean, kids were cruel. At the end of seventh grade and all of her eighth-grade year, kids were cruel. 

“I always told her, ‘There’s kids that are mean, and there’s kids that are bullies.’ And she had a few bullies. … There (were) a couple kids that would poke at her arm and make fun of her weight.”

So Lily decided to do what any teenager might do when faced with bullying and self-image issues: She tried to change her appearance. And that meant she started refusing to take vital medications.

On July 7, 2022, Lily and her family were told that Lily’s body was rejecting her new heart.

“We found over the past year, right before she went in for rejection, we found she was hiding pills,” Nicole said. “… She didn’t want to take them anymore.”

Now, nobody could say for certain if this is what caused Lily’s heart rejection, but whatever the cause, the news was devastating.

“We were saying, ‘Did we jinx her?’” Nicole said. “Because we said, ‘Man, six years (since the transplant), and she’s going strong.’ With every appointment, she was doing beautifully. And then our appointment on July 7 (of 2022), we went in. She was feeling fine, just a little tired. And they told us that she was in heart rejection. We’re like, ‘What?’

“… We knew it was a possibility, but that was absolutely devastating. We just couldn’t believe it.”

This left the doctors and Lily’s family plotting what to do next. A second heart transplant was certainly on the table.

“They were talking about it,” Nicole confirmed. “They wanted to exhaust all the options with, like, infusion, all the medications, trying to monitor her. But there was constant talk over the past year about another transplant.”

Finding peace

Perhaps finding out her heart was in rejection caused Lily to see the big picture that this was her life on the line, so what did it matter if some ignorant kids were making fun of her?

But it was also at this point that Nicole truly realized her daughter was not just dealing with a physical malady. This was a mental health challenge, too, something true probably for all teenagers, but especially for one whose life was literally on the line every day.

So Lily got into therapy.

“Therapy really helped her over the past six months,” Nicole said. “She got better, I think, as the (heart) rejection went on. And she really, like, woke up and realized, ‘Oh crap, I could die. I need these meds.’ When we got her into therapy, finally she started taking them willingly. She didn’t feel comfortable not taking them without us. She really went through a lot. Mental health is hard for a kid.

“… I was always advocating for her mental health. Sometimes I felt like, ‘Was I not taken seriously?’ I was finally taken seriously at the end, the last leg of her life. But I always advocated, I always told everybody, ‘Her mental health is really struggling. I know my kid. I know that this is not her. I know that this is not right.’”

As Nicole tells it, at this point, Lily really began to flourish as a person, despite her health issues.

She used drawing, music, art and writing as vital therapy. She and her stepdad bonded over the musical “Hamilton,” and she and her dad bonded over music. 

Lily and Nicole, meanwhile, read the 2012 novel “The Fault in Our Stars” and watched the subsequent 2014 movie together, about a teenage boy and girl bonding over their cancer diagnoses. They also saw the movie “Five Feet Apart,” the 2019 romantic drama about two young patients with cystic fibrosis attempting to have a relationship while being forced to remain six feet apart from each other.

Nicole says those movies still help her to cope with Lily’s death.

“Even though the romantic part of it is cheesy, the friendship part of it in those movies, we could identify with those,” Nicole said. “Those were two of our favorite movies. 

“That’s honestly what’s been getting me through, is watching that.”

Lily also shared a journal/sketchbook with one of her friends, and Nicole read from an entry dated April 28, 2023.

“She wrote, ‘Thought of the Day, Lily’s page only, 4-28-23, at 7:04,’” Nicole read. “‘Life is just like a clock ticking your life away. Like every day looking at the clock makes me think of how much minutes that was took away from me. 4-28-23.’”

Yes, while therapy helped Lily cope with life as a teenager, it also helped her cope with the reality that death was much closer and much more of a reality for her than for other teenagers. And Lily admitted she was sometimes angry and upset over what happened to her heart.

“She was so grateful for the transplant,” Nicole said. “But it’s hard for someone who is that young to process all that. And then as you’re growing into it, I think she was really thinking about it all, like, ‘Somebody had to die for me to live. And it’s not fair.’ 

“I know she asked me a few times, like, ‘Why did this have to happen to me? What was so wrong with my body?’ And I remember thinking back now, we had those conversations, especially when she was angry or upset, like, ‘Why did this have to happen to me? Why did I have to get sick? Why couldn’t it be somebody else? Or why does it have to be anybody?’”

Final weeks

On June 29, 2023, Lily and her family received wonderful news.

Her biopsy was clean.

“Her heart rejection was gone,” Nicole said. “Her heart came back clean.”

Yet, as the reality always was for Lily and her heart, that didn’t mean she was out of the woods. And the worst-case scenario soon unfolded.

On July 27, while going in for an infusion at the Herma Heart Institute – Lily jokingly referred to these as “tune-ups,” like a car getting its oil changed – with Nicole, Lily suddenly felt ill. She thought it was just an anxiety attack.

“On our walk up to the skywalk, she goes, ‘Mom, I’m not feeling good. … I think it’s my anxiety. But, Mom, I’m not feeling good. I need to sit,’” Nicole recalled. “I was like, ‘OK, but we have five minutes, and we have to get down to the first floor. … C’mon, Lily.’”

Lily was yelling at Nicole and demanding a garbage bag when she grabbed onto a garbage can and began vomiting. A helpful gentleman witnessed the scene and told Nicole that he would call someone for help. Nicole still figured it was just a bad anxiety attack, but then Lily slumped over. Suddenly, the situation had become very serious and very chaotic.

A certified nursing assistant, Nicole thought of giving Lily CPR at that moment.

“She went unconscious. I’m like, ‘Lily, Lily?’” Nicole said. “… Me, as a CNA, I’m like, ‘Why didn’t I go into CPR?’ … The guy’s like, ‘I’m calling for a Code Blue.’ It just happened so fast, and I’m screaming, ‘Oh gosh, if this is how we’re going to go out, and the last thing she says is, “Give me the damn garbage bag, I’m mad at you, because you didn’t listen to me!”’ 

“… And then, all of a sudden, somebody took me and her away. I see her two doctors running, I see a whole bunch of people coming in. Before that, I’m screaming, ‘Why is it taking so long for help? Herma Heart is right there, right down the hall!’”

Lily did indeed receive CPR to revive her weak pulse and get oxygen flowing back to her brain. Nicole said she was told that had Lily totally lost her pulse, she wouldn’t have been able to come back from it. The whole experience was traumatizing for both her and Lily.

After five days in the hospital, Lily was sent home with a Holter monitor, a type of portable electrocardiogram.

Since she had just had a clean biopsy a month prior to this incident, Lily and her family – and the doctors – didn’t seem to quite understand why she had suffered this scary episode, but the doctors concluded that maybe she had just passed out because she was so anxiety-ridden, which affected her heart. Nevertheless, the Holter monitor could help everyone keep an eye on things going forward.

Then, on Aug. 15, Lily was at her dad, Dan Bella’s, house. Suddenly, Nicole received a frantic phone call from Dan.

“Her dad’s calling me, ‘It happened again, it happened again. She has no pulse, and I’m doing CPR. They’re doing CPR,’” Nicole recalled.

As Dan relayed it to Nicole, Lily had eaten some strawberries, then she suddenly felt ill and threw up. That made her feel better, and she got up and started walking. But she immediately passed out again, and Dan caught her.

Dan dragged Lily out to his front yard to perform CPR, and Dan’s wife, Lisa, called 911. Paramedics arrived and transported Lily to Froedtert South in Pleasant Prairie. But there was little anyone could do to save her.

“When they came to us in the room, they said, ‘We can keep working on her. She’s not coming back. But if she did come back, there would be no sort of life,’” Nicole said. “And I just said, ‘Please just stop working on her.’”

Lily Lachman was pronounced dead, surrounded by loving family, at Froedtert South on Aug. 15, 2023. The family still isn’t sure exactly what caused the sudden heart failure. They’re hoping to get some answers soon, but Nicole said it really doesn’t matter.

“Her last doctor’s appointment was Aug. 11,” Nicole said. “Again, nothing was wrong. We went to Herma Heart that day, had her echo, checked her levels. Nothing was wrong. They didn’t get an inkling.

“… We’re sending the Holter monitor back, because she had the Holter monitor on, and I’m hoping they will be able to pick up something from that. But we didn’t want to do an autopsy, because her body’s been through enough. It really wouldn’t change anything. Now, my husband and I were like, ‘Maybe we should’ve, because it could’ve helped the next kid.’ But it wouldn’t bring her back. I’m hoping maybe the Holter monitor would’ve sensed something.”

And while Nicole and the family knew Lily was on borrowed time, her manner of death was sudden and difficult.

“We didn’t expect this to happen like this,” Nicole said. “… It’s a double-edged sword. Like, (we’re) thankful she went quick. But we didn’t think it would happen like this, unexpected. 

“… It just happened so unexpectedly.”

Life and legacy

The uplifting part of this sad story, however, is that in the months before her death, Lily really led an extremely fulfilling life, laden with memorable moments.

During one hospital stay, Lily was able to FaceTime with famous actor and Kenosha native Mark Ruffalo via Ruffalo’s longtime hometown friend, Richard Anderson, the stepdad of one of Nicole’s friends. Through some reaching out and mutual connections, Anderson and Ruffalo’s father came to the hospital to visit Lily, where they put Ruffalo himself on FaceTime.

Ruffalo portrayed The Hulk in “The Avengers” movie series, and Lily was a big fan of the Marvel world.

“I was wishing her dad was there that day (when Lily met Ruffalo on FaceTime), because they really shared the love for ‘The Avengers’ and Marvel,” Nicole said.

This summer, to celebrate her clean biopsy, Nicole bought front-row tickets for her and Lily to see a band that Lily loved, AJR, an indie pop act consisting of three brothers that was scheduled to perform at Summerfest. Unfortunately, that concert was canceled because the father of the band’s brothers passed away.

With that news, Lily displayed her considerable empathy.

“I think she was more upset and devastated that their dad passed away than missing the concert,” Nicole said. “She was upset about missing the concert, but she was more worried about that.”

Lily got to experience other “normal” teenage moments in her final days, like hanging out with a boy. Nicole said Lily developed a friendship with a boy they call Jay undergoing his own health problems. When Lily was in the hospital following her complication this past July 27, Jay was there, too.

“Her eyes lit up, and she had a big smile on her face,” Nicole recalled. “And we’re like, ‘What are you smiling for? What are you smiling at?’ She goes, ‘He’s here, Mom!’ I’m like, ‘Who’s here?’ She goes, ‘Jay!’ And there he was, walking past the room with his nurse. And I’m like, ‘Did you guys plan this?’ 

“… So they got to play their Monopoly and their Uno. Those were her two favorite games that they bonded with. And they got to play video games, go to the teen lounge. It was, like, she got it. She got him, and he got her. It was really nice.”

Indeed, Lily’s final weeks were full of memories. It was like she was at peace with her life.

“She got to do, I think, everything she wanted to do and packed it in in those last two weeks,” Nicole said. “She got to stay out late, hang out with older high schoolers. She got to go to the mall, she got to go to the State Fair with her older siblings. She got to ride the rides, eat the food, stay up late, conquer her favorite video game that I bought her, ‘Five Nights at Freddy’s.’ She got to go to the movies with her dad. Even in that last month, she got to pack in a lot. 

“And this summer, she got to pack in a lot. She got to go to Atlanta, got to go to Michigan, really got to spend a lot of quality time with her dad and her stepmom and her siblings over there. … She got to make amends with people that she was on the ‘teenage outs’ with, because you know how kids get. … She got to do her registration, so we got her last school picture. She got to do a lot of things that she really wanted to do.”

And Nicole said Lily also had frank conversations about dying as that reality became closer and scarier. She talked about death with her therapist and her family.

“My husband and her would have these talks about it,” Nicole said. “She’d be like, ‘I just feel like when you die, you just die. Your body just goes to science. That’s it. You don’t go anywhere.’

“But then my husband goes, ‘No, as much as we had those talks, I think she truly did believe that she does go somewhere,’ and I was reassured.”

During her life, after receiving her heart transplant, Lily and her family were actively involved with American Heart Association events, participating in balls and walks. She became something of an area youth ambassador alongside Kenosha’s gregarious Manny Rios, also a heart transplant recipient who’s sometimes referred to as “Mayor Manny” for his outgoing nature.

Lily and Manny were friends, though Nicole said Lily was always a little more “media shy” than Manny is. Nevertheless, Lily shared her story because it helped others, and now her family is left to share Lily’s legacy and what her life meant.

For starters, Nicole is advocating for the importance of organ donation, which Lily was both a recipient and a giver of. Nicole says Lily “has actually saved 40 lives” and even donated her eyesight to a transplant recipient, meaning someone is now literally seeing the world through Lily’s eyes.

“Register as an organ donor, because organ donation is amazing,” Nicole said. “… We actually just got a certificate in the mail in honor of her donating her eyesight. I’m planning on writing a letter to the recipient in time.”

Nicole also wants Lily’s life to demonstrate the importance of advocating for your child’s mental health. Even though therapy couldn’t stop Lily’s heart from failing, it helped her process her teenage angst, deal with her health challenges and live a life ultimately far more fulfilling than her 14-plus years.

“From the very beginning, we put her story out there, because we wanted to advocate for people to always advocate for your child,” Nicole said. “If something seems wrong, fight for it until you get the answer you are looking for. 

“I should’ve advocated more, and maybe we would’ve found out sooner that she was in heart failure. It’s the shoulda-coulda-wouldas.”

Nicole plans on turning some of Lily’s art into a book that she can share with others to honor Lily’s memory. She may even take some of the art Lily created about bullying to show school districts the impact bullying has on its victims.

Nicole is not vindictive toward those who may have teased or bullied Lily during her teenage years. But she hopes they can learn something from it.

“You really need to treat people how you would like to be treated,” Nicole said. “People that are going through health battles, it’s a lot harder than when you’re not. Then you add the bullying and the meanness to it. Life is too short.”

Others have asked Nicole what they can do to honor Lily’s memory, and she has plenty of suggestions, some of which she recently said she shared in a Facebook post: talk about Lily’s story, share her memories, donate items like clothing, non-perishables, toys and art supplies to Ronald McDonald House Charities, become an organ donor, donate plasma and blood, or make a donation to the Herma Heart Institute, your local child life department, your local hospital, the American Heart Association or Children’s Hospital of Wisconsin.

Or just do something simple to enrich your own life and well-being, like Lily did toward the end of her life to find peace.

“Listen to music,” Nicole suggested. “She loved listening to music, playing video games. Just do something in her memory that she would love.

“… Lily loved to go on long car rides. … She just loved life. Even on our hard days, she loved life.”

Fortunately, Nicole said, Lily’s medical expenses were all covered. However, Nicole had to stop working over the last year, because caring for Lily and her other siblings required so much time and attention, and Nicole wanted others in the family to be able to continue working.

To assist with that, Nicole’s friends arranged a Celebration of Life Benefit to honor Lily and help out her family this Sunday (Sept. 24) at noon at The Vault, 625 57th St. The entry fee is $10 for adults and $5 for kids under age 6. All proceeds will go to the family to support Lily’s end-of-life expenses, and the benefit will include food and drinks, basket raffles, a 50/50 raffle, a silent auction and – of course – music.

“We are so thankful for the community,” Nicole said. “The community these past eight years has just been phenomenal. We couldn’t have gotten through the last eight years without everybody.”

For Nicole, at least, remembering and talking about Lily has been the best way to process her grief. Just like life, death leaves behind a juxtaposition of tears and smiles, happiness and sadness, gratitude and anger.

“This month, talking about her, watching videos, looking at pictures, has helped me in so many ways,” Nicole said. “People sharing their memories and how she’s touched their lives, it has gotten me through. 

“I miss her terribly.”

And in the end, maybe it’s just something simple we can all do to remember Lily Lachman and honor an inspirational life cut far too short. 

As a wise writer once told us: Talk less. Smile more.