One man's journey with Down syndrome shows how far we've come in 30 years.

Richard and Didi Dobbs didn't know much about Down syndrome when their nephew Sean was born with the condition in 1985.

The only thing they did know — and according to all of the information they could find on the condition — was that it was synonymous with "Mongolism." Which, as you can imagine, was less than reassuring.

"It was the '80s, and there was no Internet or anything," Didi told Upworthy. "I knew the very little that people in the '60s would know, which is that it was odd, or freaky, or scary."


Before the '80s, the average life expectancy for a person with Down syndrome was 28 years, and it was common for children born with the condition to be sent away and raised in institutions or group homes, segregated from educational opportunities and the public at large. In fact, up until 1984 — just a year before Sean was born — doctors were not legally required to give medically indicated treatment for life-threatening conditions to infants with disabilities.


Sean as a toddler. All GIFs via Richard Dobbs/Vimeo.

So the Dobbses tried to help their family, and others like them, the only way that they knew how: by turning the cameras on.

When Sean was 2 years old, they began to film his life with the ultimate goal of turning the footage into an informational video to help other families treading the then-uncharted waters of raising a child with Down syndrome. At the time, no such movies existed, at least not that they could find.

Over the years, they documented all the major milestones in Sean’s life. They filmed his speech and occupational therapy classes as he learned to walk and talk. When he took a liking to swimming, they brought their camera along to his high school swim meets. They followed him to the prom and to his high school graduation, when he became the first special needs student in the 2,000-person school to graduate on time.

Sean shaving before the prom.

Their archival footage was interesting to family and friends, but it wasn't really a story ... until they learned that Sean was going to compete in the National Special Olympics Triathlon in 2014.

Suddenly, the film that had been nearly 30 years in the making had a whole new shape as well as a name: "Sean So Far."

The Dobbses began to chronicle Sean's preparation alongside his triathlon partner, Troy — the only two athletes from Connecticut to compete in the national games that year. Their friendship would go on to become one of the lynchpins of the film.

Sean and Troy training together.

But the film took another unexpected turn when Sean was rushed into emergency spinal surgery six months before his big race.

During an obligatory physical, doctors discovered an atlantoaxial instability in Sean’s neck. This is a fairly common congenital complication in people with Down syndrome, although that doesn't make it any less serious.

Sean ended up missing eight weeks of training that winter while he recovered from the surgery. But as soon as the neck brace was gone and the doctors gave the word, he was right back at it, determined to get himself back into shape before the race.

Sean ended up taking home the bronze medal at the National Special Olympics that year, but his story didn't stop there.

Just two weeks after the race, Sean and Troy were invited to attend a black-tie dinner at the White House on behalf of the Special Olympics International Committee.

Sean was even given the opportunity to deliver a speech to President Barack Obama and his family. "His mouth had no muscle tone when he was a baby — we have footage of that — so this speech was a big deal!" Didi Dobbs said.

Sean meeting President Obama.

The Dobbses have seen a lot of changes in the 30 years that they've been working on "Sean So Far" — both in Sean himself and in the way the world looks at Down syndrome.

Didi recalled seeing a child with Down syndrome in a recent commercial for Target and noted how that kind of visibility goes a long way to normalizing the condition and building empathy for people with it. After all, that's how Sean has been able to do so many amazing things: by thinking that he could and having a family who supported that.

"Sean learned that everything is possible, not that he has limits," Didi said. "He knows he has Down syndrome, and he talks about it. Yes, it's a disability. But I heard someone refer to it as 'life in a different key.' And that's how I've come to see it."

Sean being interviewed about self-respect for the documentary.

As for Sean himself? He’s returned to his day job, enjoying some much-needed downtime.

2014 was a whirlwind of excitement, so he's taking some time to hang out with friends, go to the gym, and catch up on his favorite TV shows and hobbies.

You know, like people normally do.

Check out the trailer for "Sean So Far" below:


Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less

Everyone can all use a little lift at the end of the week, and we've collected some of this week's best stories to provide just such a pick-me-up. Here are 10 things we want to share, just because they made us so darn happy.

1. Introducing Lila, the U.S. Capitol Police's first emotional support dog.

After the traumatic experiences of January 6th, Capitol Police officers could definitely use some extra support. Lila, a two-year-old black lab, will now serve as the department's first full-time emotional support dog. Look at that sweet face!

2. Speaking of the Capitol, take a look at this week's gorgeous solar eclipse behind the dome.

NASA Administrator Bill Nelson shared the stunning "ring of fire" image on Twitter. Always a treat when nature gives us a great show.


3. Colorado sees its first wild wolf pups in six decades.

In the 1940s, the gray wolf was eradicated in Colorado by trappers and hunters, with the support of the federal government. Whoops. This week, Colorado Parks and Wildlife has announced the first evidence of wild wolf breeding in the state, a sign of hope for the endangered species. Read more about the discovery here.

Photo by M L on Unsplash


4. 30-year-old singer with terminal cancer amazed and inspired with her performance on America's Got Talent.

Keep Reading Show less
True

Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."