Doctors Said Her Daughter Had 3 Months To Live, So She Created The Cure For An ‘Incurable’ Disease
trending post

Doctors Said Her Daughter Had 3 Months To Live, So She Created The Cure For An ‘Incurable’ Disease

<imgsrc=””>

One of the worst things that can happen to a parent is learning one of their children has an incurable, deadly disease. It’s a fate no one deserves, as Martine Rothblatt tragically learned. Her daughter had a condition that would slowly kill her. Martine, drawing on every ounce of her immense wealth and creative mind, took an active role in trying to safe her daughter’s life.

Martine Rothblatt is a self-made female millionaire. She founded a company that eventually became Siruis XM, as well as several others. Before this venture, she was a lawyer who specialized in space law.

Ron Levine/Getty Images

Back in the 1990s, she’d taken Sirius public and done quite well for herself. She considered retiring, but before she could, her daughter, Jenesis, was diagnosed with pulmonary arterial hypertension, a fatal condition at that time.

With this disease, the arteries that carry blood from your heart to your lungs shrink, making the heart work harder to pump blood to the lungs. Eventually, they can give out from the strain of the extra effort.

Danielle Jennings / CNN

There were a few options for treatment, but medication needed to be continuously pumped using a special portable device, which is stressful and inconvenient for the patient. Martine was devastated for Jenesis, but her wife pointed out that they’d weathered hard times before.

U.S. Navy via Getty Images

Today, Martine and her partner Bina have been together for three decades. They remained a couple through Martine’s transition and had four children together. They’ve led an exciting life, and Bina was a constant source of inspiration. She pushed Martine to save their little girl.

“I felt like my only purpose in life now was not to help move to the stars with satellites and stuff like that. It was to save Jenesis. So I just stopped everything I was doing,” Martine said. Jenesis would faint continually when she was a preteen, spending her life in the hospital.

Antonio Masiello/Getty Images)

Martine read journals and textbooks, trying to find anything that might save Jenesis. Her goal was to find something that could be turned into a pill that would be easy for patients to take. She put $3 million into creating a research organization, United Therapeutics, for pulmonary arterial hypertension.

THE CANADIAN PRESS/Ryan Remiorz

During her research, she identified a molecule that looked promising for Jenesis. United Therapies bought the drug from the pharmaceutical company, GlaxoSmithKline. Her company would go public a few years later in 1999.

And, in 2009, they received FDA approval for their drug, Orenitram, “Martine Ro,” spelled backwards. After achieving this remarkable milestone, United Therapeutics began selling several pulmonary hypertension medicines. But would it work for Jenesis?

Yvonne Hemsey/Getty Images

Amazingly, the little girl pulled through. Martine and Bina were incredibly grateful that their family renewed their sense of hope, but they also saw this issue was bigger than just their little unit. They could change the world.

Thanks to broader distribution of the drug, “there’s tens of thousands of people living a healthy, happy life with pulmonary hypertension,” Martine said. “Best of all…my own daughter Jenesis is now 30 years old, works at United Therapeutics, and is a happy, healthy young lady.”

Jemal Countess/Getty Images

Besides helping save her daughter, Martine’s dedication to this cause made her an even wealthier woman. Her company is valued at $4 billion — and she made $31.6 million in 2014. She was the second highest paid female CEO that year.

Eugene Gologursky/Getty Images for Liberty Science Center

Martine has helped implement some altruistic policies at her company. If patients can’t afford the medicine, she provides it for free. “It hasn’t stopped us from being a successful pharmaceutical company,” she said. “I think actually doing the right thing always helps you do the best thing.”

@zoltan_istvan, Twitter

Besides being a space lawyer and founding a few companies, Martine has many other interesting pursuits that shape her life. She calls herself a technologist, a person who “brings new technologies into being.”

@bluesuits, Twitter

In that vein, United Therapeutics’ next task is the cross-species organ transplants, something that’s been a fixture in many sci-fi series, including Margaret Atwood’s MaddAddam trilogy.

QIHAN BIO

“I always try to convert a moonshot into an earthshot,” Martine said in a Forbes interview. “The moonshot is to have an unlimited supply of transplantable organs.” The company has started their research with pig organs.

Wikimedia Commons

In 2020, United Therapeutics gained a new focus, treating acute respiratory distress syndrome, which is linked to COVID-19. They put two drugs in development, with additional research ongoing.

Ron Levine/Getty Images

Outside of that field, she recently published a manifesto, “Virtually Human.” This is around the concept of cyber-humans — like organic clones, except these contain your thoughts and memories. Martine focused on their potential rights and freedoms.

USPTO Video / YouTube

Martine started the Terasem Movement, a new religion that combines Judaism, yoga, and believing in the power of technology. We feel like Martine spent a lot of time reading Philip K. Dick and Octavia Butler.

The figurehead of Terasem is a floating head, Bina48, who was created to resemble Martine’s wife, Bina — truly amazing. And while not every parent is a technological genius, many others shared Rothblatt’s drive to do anything for their offspring.

Glenn and Cara O’Neill were living a happy life with their two children in Columbia, South Carolina until one day they received terrible news: their 4-year-old daughter, Eliza O’Neill, developed a rare disease that doctors didn’t have a cure for.

Eliza was much like any other child — running around and playing with friends. Her parents enjoyed watching her grow as life seemed to be on a steady course.

Eliza also had a passion for the outdoors, and it often seemed like she wanted to spend more time in nature than inside her home.

However, as time went on, Eliza began showing some unusual signs. She was talking less and less, and certain things she used to remember now suddenly seemed to slip her mind.

Her mother, Cara, concerned for her daughter’s mental well-being, brought her to the doctors to have screenings done. After performing some tests, the doctor came back with devastating information.

Eliza was diagnosed with Sanfilippo syndrome, a rare degenerative genetic disease that causes irreversible brain damage and, eventually, death. Glenn and Cara O’Neill were crushed.

Sanfilippo syndrome is nearly identical to Alzheimer’s. In fact, it’s also known as childhood Alzheimer’s. These sort of degenerative brain problems usually occur in the elderly, but Sanfilippo tragically affects the young.

Both of Eliza’s parents knew exactly what their daughter was facing. It wasn’t going to be long before she completely stopped talking and singing and doing all of the things children do as they grow…

Eliza’s brother spent as much time as he could with his sister after the diagnosis. The two siblings were close before, but her brother now went far out of his way to show love and affection for his sister who desperately needed it.

Cara and Glenn heard about a new gene therapy trial that potentially could stabilize Eliza. However, if their daughter came down with any kind of virus, it would have derailed her chances at being accepted into the trial, so the family took drastic measures.

They isolated themselves in their home for a total of 726 days to ensure Eliza wasn’t exposed to any kind of outside illness. It was extreme, but the love they had for their daughter made every day indoors worth it. But would it save her?

During the almost two years Eliza spent inside, she received constant attention to keep her mind active. Even though Sanfilippo syndrome was slowly deteriorating her brain, her family wanted her to stay as alert as possible, hoping it might stave off the symptoms.

Cara and Glenn started a Facebook page for their daughter in hopes it would spread the word about the disease so people all over were aware of the symptoms. So many people showed their support for little Eliza!

The O’Neill family also spent nearly all of their time raising enough money for the clinical trial. Gene therapy is expensive, and because the trial was in its earliest stages, they needed a large sum of money if Eliza was to be considered.

They raised the money any way they could. Much of it was online through social media pages, but they even did things like sell lemonade to help. They were more than determined to hit their number – Eliza’s life depended on it.

Finally, after two years of fundraising and ensuring Eliza stayed healthy, it was time to find out if the O’Neill’s daughter would be accepted into the clinical trial. Cara and Glenn waited for the doctor’s phone call in the car, and prayed he was going to give them positive news.

Miraculously, Eliza was accepted! Her parents could not believe their luck. After all the time spent fundraising and waiting, their daughter finally had a fair chance at survival.

Not long after Cara and Glenn received the phone call, Eliza went through the one-time clinical trial in Columbus, Ohio. The family was able to end their isolation, and they were excited to see if Eliza would make progress.

Since the one-time trial, Eliza’s parents have been keeping her active, and they have seen a noticeable improvement. She’s not quite able to speak, but her eyes light up when she hears music, and she still loves to spend her time outdoors.

The O’Neill family still raises money through their Cure Sanfilippo Foundation so doctors can continue their research and hopefully bring about more clinical trials. They know that, even with their struggles, there are others in a less-fortunate place.

Jeff and Julie Bryan, for instance, had a flood of happiness rush at them on the day their daughter Addie was born. That unbridled joy that day didn’t last long, however. Addie almost didn’t make it.

The moment they laid eyes on Addie, the Bryans saw something was wrong. Their baby had hip dysplasia, a club foot, and two knees that bent backwards. With a rare case of Larsen syndrome, the doctors doubted she’d ever walk.

Just days old, Addie underwent her first surgery. Dozens and dozens more followed over the next few years, with the Bryans estimating that their daughter went through 70 casts throughout her early childhood.

Fox News

The Bryans placed their full faith in the staff of Texas Scottish Rite Hospital, located near their home in Dallas. Over the years, it built a sterling reputation for treating orthopedic conditions, particularly in children.

After years of medical intervention, there still wasn’t assurance that Addy would be able to lead a normal childhood. But amid all the darkness, the Bryans still clung tightly to a glimmer of hope — one member especially.

By the time she reached seven years old, Addy didn’t see herself as any different from other kids. She made the best of everything, despite her situation. Soon, her results began to impress everyone around her.

Though her legs still retained a slightly bent shape, Addie’s range of movement grew by leaps and bounds. Before long, she started to spend more time zipping around on her scooter than cooped up in the hospital.

USA Today

And that wasn’t all. She could even run! Everyone understood that she had come an incredibly long way from her troubled infancy. There was no doubt about Addie’s good fortune, but something started to nag at her.

Julie Bryan

With her eighth birthday approaching, Addie knew she was incredibly lucky. Thanks to the folks at Scottish Rite Hospital, she could run, walk, and jump wherever she wanted. Addie only hoped every other kid could do the same.

One morning, Julie Bryan found her daughter tallying up her meager life’s savings. Addie shocked her by saying that she wasn’t just doing this for fun. She was looking to make a donation.

Addie wanted to make a real difference for the Scottish Rite Hospital in the form of a donation. Her mom suggested she open a lemonade stand with a couple friends to raise more money, but ultimately, that tactic only raised $60.

Parents Magazine

So, knowing she needed to get more aggressive, she grabbed a marker and some poster board and drew up a sign requesting donations for the hospital. Then, she ran out to her street corner in hopes of collecting a fortune.

Despite the sweltering Texas heat, Addie had an easy time standing on the corner once she saw the contributions roll in. Neighbors and complete strangers alike seemed happy to help out even if it was with just a few dollars.

After a couple months, Addie had built up a nice pile of money. Still, she was really looking to make a big fundraising leap in the final weeks before her birthday. Addie thought she could expand her operations beyond the street corner.

ABC News

Addie and her parents reached out to a local restaurant called the Cotton Patch Cafe. They agreed to hold a charity event, and Addie went all out! Channeling her inner Pat Sajak, she set up a wheel of prizes to pack the house.

By the time her eighth birthday rolled around, Addie raised a whopping $19,500 for the hospital. For an institution that relied so much on charitable donations, this was huge. Not even Addie’s parents could believe she singlehandedly raised such a sum.

Her efforts gained a lot of attention. A number of outlets shared her story, from her local news station to People magazine! A live TV interview was a good birthday present, to be sure, but Addie was about to get a better one.

FOX 4 News

Stephanie Brigger, the hospital’s Vice President of Development, called the Bryans to share some big news: an anonymous donor felt so touched by Addie’s story that he decided to share a contribution of his own.

WFAA

The Good Samaritan sent Scottish Rite an additional $50,000 in Addie’s name. That meant this eight year old’s donation totaled just under 70k! Most people couldn’t believe it, but this was exactly what Addie wanted.

She said she was glad to give so many other kids a shot at a happy life, as her gift could provide countless casts and prosthetics. Addie Bryan didn’t need anything else for her birthday. She proved that the best gift is giving back.

We tend to underestimate just how big a difference young people can make. But especially in the age of social media, they can truly change lives. When 18-year-old Tyrel Wolfe received an unusual friend request on Facebook one afternoon, he wasn’t sure what to make of it.

Ty Wolfe / Facebook

The request was from a young Filipino woman named Joana Marchan, and Tyrel was certain that they’d never met, let alone even been in the same country. Believing it to be just another scam, Tyrel declined the invitation.

Several years passed, and the strange friend request became a distant memory. He wasn’t much for Facebook anymore, but while casually checking his profile one day he noticed a new request in his inbox. The sender? Joana Marchan.

Tyrel’s interest was piqued, but his parents, wary of the type of people you find online, were understandably worried about this interest in their son. Still, Tyrel couldn’t resist getting to the bottom of this mystery. He opened the request and clicked “Confirm.”

Tyrel messaged the young woman, whose response only made things even more unclear: “you know about the Samaritan’s purse?” Tyrel was dumbfounded. What could this possibly mean? Was it some sort of code? Then, all at once, it hit him.

Samaritan’s Purse was a non-profit through which a seven-year-old Tyrel had donated a shoebox full of gifts as part of a charity program called Operation Christmas Child. But why, 11 years later, was this stranger from the Philippines contacting him about Christmas presents? And, most importantly, how did she know about his donation?

Then, Joana came clean: it was she that had received Tyrel’s shoebox all those years ago! Tyrel was blown away by the news, but even so, he was still skeptical of the young woman’s motivations. After all, how was he to know if “Joana” was really who she said she was? He needed proof.

Faithit

Tyrel questioned Joana about the contents of his gift, but she was unable to recall anything specific about the shoebox. He was ready to write her off, but at the last minute, Joana brought up one key item that proved she was telling the truth.

In the original shoebox, Tyrel had included a picture of himself at the time of the donation. Joana recalled the photo in perfect detail, describing his “cute cowboy” outfit and the “wooden background” of the image. Without a doubt, Joana was exactly who she said she was — and the story of she and Tyrel was only just beginning.

Ty Wolfe / Facebook

Though most would go their separate ways after a one-off encounter like this, Tyrel and Joana stayed in touch and soon discovered they shared many of the same interests. Eventually, the pair was talking every day, and their Facebook chats soon blossomed into a fully-fledged friendship.

Over the next year and a half, Tyrel began saving up in the hope of visiting Joana after he graduated high school. As soon as he’d met his goal, he messaged Joana and immediately booked the next flight to the Philippines.

Business Traveler

Long plane rides are rough on everyone, but being that Tyrel had never left the country alone before, the 14-hour trip from Idaho to the Philippines was especially tough. But no matter how difficult the journey, it was all worth it for Tyrel when he arrived to find Joana and her family waiting at the airport to welcome him.

What was meant to be a short visit for Tyrel became a month-long stay as he and Joana discovered that their connection was deeper and more real than they could’ve ever imagined. It was clear that the Facebook friends were becoming something much more.

Ty Wolfe / Facebook

Unfortunately, Tyrel had to say goodbye to Joana, but he knew in his heart that he couldn’t stay away for long. Putting in extra hours of part-time work between his college classes, Tyrel scrounged up enough money to make another trip back to the Philippines.

His second trip to see Joana was even better than the first, and it wasn’t long before the two had fallen in love. After learning a good amount of Tagalog – the native language of the Philippines – Tyrel approached Joana’s father to ask for one very important thing: his daughter’s hand in marriage.

Joana’s father agreed in a heartbeat, but her mother, fearing the couple was moving fast, was hesitant to give her blessing. Tyrel was heartbroken, but the young man was unwilling to leave the Philippines without the woman he loved by his side.

In a last-ditch effort, Tyrel convinced his father to fly in from Idaho to meet Joana and hopefully ease the tensions between him and her family. After several weeks of discussions, Tyrel and his father finally persuaded Joana’s mother to agree to the proposal.

In October of 2014, just five months after their engagement, the couple wed in a simple ceremony at Tyrel’s parents’ ranch. In lieu of wedding gifts, the newlyweds made an unusual request that brought their unconventional love story full circle.

Tyrel Wolfe / Facebook

Tyrel and Joana asked that each guest bring a shoebox of gifts to be donated to none other than Samaritan’s Purse! They also asked their guests to include a note about Tyrel and Joana’s story in each box to show how one small act of kindness can completely change someone’s life.

San Ynez Valley Star

After their wedding, Joana agreed to leave her home in the Philippines behind in favor of small-town life with Tyrel in Idaho. Their quiet country home was soon filled with the pitter patter of tiny feet, as not long after Joana gave birth to their first child, a baby boy named Harlann Jun Wolfe.

Marvin Quemado / Facebook

Even with lives made busy by work and parenting, Tyrel and Joana still make it a tradition to deliver shoe boxes every year. It might not seem like much, but as the unlikely couple can attest to: you never know what kind of good can come from a shoe box.

The post Doctors Said Her Daughter Had 3 Months To Live, So She Created The Cure For An ‘Incurable’ Disease appeared first on Eternally Sunny.

Doctors Said Her Daughter Had 3 Months To Live, So She Created The Cure For An ‘Incurable’ Disease

Most Popular

To Top