Cystic fibrosis (CF) is a hereditary disease that affects the secretory glands, thereby impacting the functions of various organs in the body. Though this condition has a limited life expectancy, it definitely doesn’t limit one’s expectations and achievements in life. As an inspirational example, this article peeks into the life of some famous people with cystic fibrosis, and how they lived their life to the fullest, while facing the challenges of CF.
In healthy people, the fluids secreted by the glands are thin and slippery, acting as a lubricant for various bodily functions. However, in people with cystic fibrosis (CF), the fluids are thick and sticky which tend to block the passages in the organs of the body. It is a genetic disorder, which means that it is passed from the faulty genes of the parents to the child. CF affects the functioning of the digestive system, lungs, and sweat glands. It also affects the sinuses, exocrine glands of the liver, pancreas, intestines, and the sex organs. It is characterized by frequent lung infections, breathing difficulties, poor growth due to the inability to absorb the essential nutrients from food, deficiency of salt in the body, constant pain, and so on.
There was a time when people with this condition could hardly reach adulthood, but with the help of medical advancements, people are known to have lived with this condition even into their 40s and 50s. In the list of famous people with cystic fibrosis mentioned below, you will see people, who through their discipline, determination, and love for life, have lived achieving great accomplishments, living their lives beyond normalcy.
Here is a list of some of the famous people who lived with cystic fibrosis and fought bravely against the odds to be a source of inspiration for many. Click on the names enlisted below to read their inspirational story.
“That’s the nicest thing. Because when I’m in hospital I see so many people just worried about their health. So it’s great that they can see some random plonker like me just get up and do something. It’s really nice.” – Alex Stobbs (In an interview with Channel 4, when he was asked how it feels to be an inspiration to young kids with CF.)
This young man is a musical prodigy, achieving some of the greatest accomplishments in such a short span of time. Alex was born in England on January 30, 1990. At the age of 17, he conducted Johann Sebastian Bach’s Magnificat at Eton College, where he was a music scholar. Two years later, he conducted Bach’s St Matthew Passion in London, to help raise funds for others with cystic fibrosis. He was then a choral scholar at King’s College.
“That’s one of the things he has taught me – pouring your energies into something creative helps override feelings of despair and depression.” – Suzzane Stobbs (Alex Stobbs’ mother)
Alex was also the subject of two documentaries made on his life, showing his struggle with cystic fibrosis, and how he balances his health with his academic and music schedule. The first documentary – A Boy Called Alex – was released in 2008, followed by its sequel titled Alex: A Passion for Life, the next year in 2009. Both these films were broadcasted on Channel 4. In an interview with Channel 4, when Stobbs was asked why he participated in the film, he replied –
“I had this idea that the publicity for Cystic Fibrosis would be really, really good. I didn’t realise just how good! I’m really keen on promoting awareness of CF, and the film did a great job.”
Not only does Alex love his music, his determination and passion towards it is also helping him cope with CF. In an interview with Channel 4, he says –
“The best thing I’ve found this year is that choir’s a natural form of physiotherapy, and I actually cough up more during choir than at any other time during the day. It gives the lungs such a complete work-out. My lung function actually improved quite dramatically at the start of the year because I was singing so much.”
In 2009, Alex published his book titled A Passion for Living, where he shares about the challenges he faced while preparing himself prior to the conducting of Bach’s St Mathew Passion. He also shares about his preparation for A-levels, while dealing with the health complications caused by CF.
An article published in The Guardian on Alex Stobbs, states that Alex needs to have about 70 pills, along with intensive physiotherapy. Also, in order to keep his weight up, he is tube fed high-energy fluids worth 2,000 calories every night. This is done through a pump that is directly attached to his stomach.
In spite, of all these difficulties, Alex has proved that there is nothing that can stop you from living your dreams, if you have the passion and the determination to do it.
“This was the most extraordinary person who was going to be in my life and given the circumstances of cystic fibrosis and the desperate need for as much attention as we could get, I would have felt irresponsible if I hadn’t tried to write the book.” – Frank Deford
Alexandra Deford was the daughter of Frank Deford, a well-known writer for the magazine Sports Illustrated. Alexandra (nickname: Alex), was an angel of the family. She was diagnosed with CF in 1972. During that time, there wasn’t much information and awareness about CF. Even the life expectancy at the time wasn’t as much. In fact, doctors had told the Defords that Alex wouldn’t survive for more than 2 years after diagnosis, but the little brave girl fought with CF till 8 years!
Alex was an adorable and inspirational child in the family, and after her death, her life became an inspiration to many, when her father Frank Deford wrote a book based on her life, Alex: The Life of a Child. Her story deeply impacted millions of hearts, and created awareness all across the globe about cystic fibrosis.
“It’s tremendously gratifying to me. Rarely does a week go by that I don’t get a letter about that book. People leave things at her grave. They really do. I have people tell me that she changed their lives. It’s terribly dramatic, but they literally say that. I heard from a woman who became a pediatric nurse after reading the book. Hearing from people like that means more to me than anything.” – Frank Deford
Later on, a television movie was made with the same title, and it gained popularity worldwide, reaching out to people who didn’t read the book. Frank Deford made sure that her daughter’s story created awareness about CF, and in a way, helped and inspired people to respect and value a gift called Life.
“I can make believe that I am fit and healthy. It is the thought of what I might be able to achieve after my transplant that will help get me through it . . . my name in lights . . . being up on stage . . . winning my first award . . . and the applause . . . I get quite carried away sometimes, and then I wake up.” – Alice Martineau
A gifted singer, songwriter, and model from Britain died at the age of 30 because of cystic fibrosis. When asked in an interview, what is that one cause for which she would die, she replied, “None – I value my life too much.” In spite of being so ill, she believed that she was not as ill as people kept on telling her. She was on the waiting list for a heart, liver, and lung transplant for 18 months, but died before that could happen.
Even though she was ill, she lived a life that she always dreamed of. She had signed deals with some of the leading music labels, including Sony Music. Her album called Daydreams, and a hit single If I Fall, was released in November 2002. Due to her deteriorating health, her next song called The Right Time remained unreleased. She died on March 6, 2003.
Alice always wanted to be remembered for her music and not for her illness. She hated being referred to as “brave” and disliked others giving her sympathy. She always followed her heart. In spite of being unwell, she continued writing lyrics, and singing, even if her illness made singing a difficult thing for her to do! Music was an escapism for her which made her forget her heavy medications and treatment machines. When asked what is the lesson that life had taught her, she said, “Appreciate what you’ve got, because you never know when it’s going to be taken away.”
Her unending passion for music and life remains to be an inspiration for all of us, reminding us that life is too valuable to waste.
“I have seen this guy live on TV. He is just amazingly fit. Now, that I know of his physical condition, I do not have words to appreciate his determination and will power to succeed at all cost. Having such a disease and becoming a wrestler. A sport which requires all the faculties to function to the optimum and this guy has cystic fibrosis and so many titles. Just goes to show where there is a will you will find a way to beat the odds.” – Sebestain Turkey (A fan of Andrew Simmons who commented his feelings after learning Andrew’s condition)
Andrew Simmons is a successful British Wrestler. He is famously known as Andy Boy Simmonz – his ring name. His other ring names include – El Meano, The International Man of Mystery, and Simmons the Butler. As viewers, it is entertaining to watch him fight the battle with his competitors, but people who are unaware of CF, seldom realize that Andrew Simmons doesn’t only fight for his profession, but he also fights for his life.
Simmons has won many wrestling championships, including – the British Real Attitude Wrestling League (BRAWL) Heavyweight Championship, Extreme World Wrestling (EWW) St. George’s Championship, European Wrestling Federation (EWF) Trophy (2004), Frontier Wrestling Alliance (FWA) World Heavyweight Championship and FWA Tag Team Championship, International Pro Wrestling: United Kingdom (IPW:UK) championship, and there are many many more accomplishments to add to this list.
Simmons’ work speaks for him, and tells the world that determination is all it takes to overcome all the hurdles of life.
“When I die, it’s not going to be a tragedy, it’s going to be a release … It’s Bill finally being able to set down a weight that’s gotten very, very heavy.” – Bill Williams
Born in 1960, Bill Williams grew up to become a programmer and game designer. He is credited with the design and development of the well-known Atari games like Alley Cat and Salmon Run; Amiga games like Sinbad and the Throne of the Falcon, Mind Walker; and also Nintendo Entertainment System’s Monopoly, to name a few. Designing computer games was his passion, it gave him a creative satisfaction. However, during the later stages of his career, he left the gaming industry after realizing that it had become too corporate. The creative satisfaction and the magic that Williams once felt, went missing.
During his final days, he received many offers from companies to design video games. In an interview published in the Amazing Computer Magazine, he said “My job these days is breathing.” He suffered from cystic fibrosis, which he described as a demon, that punished him mercilessly. He also wrote a book titled Naked Before God: The Return of a Broken Disciple, in which he, through his poetic and witty writing style, questioned Jesus about the reason behind his pain. This book depicts Williams’ struggle with cystic fibrosis, and an attempt to find the answer to his suffering. Williams died on May 28, 1998, shortly after this book was published.
“Fight pain with pain, and fight sickness with sickness.” – Bob Flanagan’s Motto
Bob Flanagan was probably one of the most controversial, and the longest-living survivor with cystic fibrosis, dying at the age of 43, when most CF patients would barely reach their 40s at the time. This American was known for his poetry, music, writing, comic, and his performing arts on sadomasochism. BDSM was a way through which he coped with his illness – fight pain with pain, as he always said. He also considered sadomasochism to be the reason for his comparative long life. He became controversial after he was featured in a song called ‘Happiness in Slavery’, which was largely banned for his nudity and torturous molesting sequences done by a machine on him.
Apart from his work, he actively participated towards the welfare of the local groups working for cystic fibrosis, also raising funds for these groups through his performances. He would attend summer camps with kids having CF, sing songs for them, and even perform for them. He maintained a journal called the Pain Journal in which he described the frustration, pain, and disappointments that he had to go through during his life due to the illness. In spite of all this, he always lived his life on his own terms, freeing himself from each and every bondage, and doing what gave him happiness.
In an interview done for a three-part-series writeup titled as Art as Medicine – Part 1: Cystic Fibrosis and Bob Flanagan, Bob’s step son, Matt Levin, was asked how Bob’s life helped him understand and face the challenges in his own life, his answer included these lines –
“I know this sounds cliche but I had an appreciation for being healthy and living life to the fullest. I also learned that you do not have to be weak just because you have an illness. You can use humor and unconventional ways to combat illness. It was Bob’s art and will that fought his illness.” – Matt Levin
Christine Nelson was the daughter of the renowned American puppeteer, voice actor, and singer Jerry Nelson, who is famously known for his work in Sesame Street , The Muppet Show, and Fraggle Rock. Christine often accompanied her father on the sets of The Muppet Show, Sesame Street, and Saturday Night Live. She always wanted to become an actress, and also did a cameo in The Great Muppet Caper along with her dad. The creator of the Muppets, Jim Henson, gave her a speaking part so that she could get the Screen Actors Guild card and become a member of the actor’s union. Sadly, Christine died before she could watch the premier of the film. She was only 21 at the time of her death, while the average life expectancy of people with CF was only 15 years back then.
Her mother Jacquie Gordon, eternalized Christine by writing a biography after her life, titled Give Me One Wish. This book highlights her struggle with CF and the way she dealt with it. In her honor, an award was also named after Christine by her school, Rye Country Day School.
“I don’t know any different. It’s not as though there was a time when I didn’t have it. I knew from the time I can remember that I had something different about me. You just learn to cope.” – Chris Davies
Chris Davies is a former first-class cricketer from Australia, who played for the South Australia cricket team from 1997 to 2004. He is now, the Football General Manager of the South Australian National Football League. At the age of 14, he was a part of the Southern Districts first XI. He was also the vice-captain in the 1996 youth World Cup, and the winner of the South Australia Young Cricketer of the Year Award. Being a highly-talented cricketer at such a young age, he entered the team of the Southern Redbacks in 1997. After his premature retirement in March 2004, he, apart from his coaching career, started working towards creating awareness and funds for people with cystic fibrosis. He also supports various organizations and trusts for CF. In 2003, Davies became the second person to receive the Tanya Denver Award. After winning the award, he said –
“Winning the Tanya Denver Award is truly an honour. I hope that by me winning this award, young kids who also suffer from cystic fibrosis might just realise it still is possible to achieve your dreams – whether in sport or other facets of life.” – Chris Davies
He is another inspiring example showing that even if you have a disease such as CF, it is possible for you to go out there and show the world that you are no less than any “normal” person.
“I came to view serious and progressive illness as an ever constricting circle with oneself at the center….At the innermost point of the circle are the things that really matter: family, faith, love. These things stay with you until the day you die. At the very end, because the circle has shrunk down to its center, they’re all you have left. But as we approach that end, we finally realize that all along, they were what mattered most. As a consequence, life often remains beautiful and worthwhile right up until the end.” – Dean Barnett
Dean Barnett was an American conservative blogger and columnist. His popularity also made him a fill-in radio host for Hugh Hewitt. In 1989, he graduated from Harvard University, holding a bachelor’s degree in government. Later, he also obtained a professional doctorate degree in law from Boston University Law School. His career involved various political ventures which included his running for the state representative in 1992, volunteering for Mitt Romney’s Senate campaign in 1994, and writing on conservative politics and other social issues in his blogs.
He is remembered by his loved ones as a person who was full of life. People describe him as someone who was an adorable friend, witty, high-spirited, and an example of how to live life with zest, courage, and joy. He was an inspiration to those around him, and had the ability to easily win the hearts of everyone. He was diagnosed with CF when he was an infant, and he often wrote about his disease and the struggle that came along with it, in his blogs. In spite of his infirmities, he never succumbed to self-pity. He wrote in his blog –
“But regardless, this treatment has given me time – time to spend with my wife and family and friends. Time to hit golf balls (usually sideways, but even that’s alright). Time to chase my dogs around the house. Time that frankly I didn’t expect to have. There could be no greater gift, and it’s a miracle in so many ways.”
When Barnett was born, the average life expectancy was 8 years, and Barnett lived till 41. He attained a lot of popularity through his radio shows and writings, making numerous fans and admirers, and thereby spreading awareness about cystic fibrosis. In an interview taken after his death, his brother stated –
“Although he didn’t set out to do this, he was an example to the entire cystic fibrosis community that one could still build a life with meaning and I think he took pride in that.” – Keith Barnett (Dean Barnett’s brother)
“I’m living my life not for the number of breaths I take, but for the number of moments that take my breath away.” – Eva Markvoort
Eva Markvoort was one of those people who spent their life working towards the welfare of people with cystic fibrosis, and even after her death, her story continues to inspire millions across the globe. Eva was a Canadian beauty queen, and a blogger. Her blogs were a means through which she shared her life with cystic fibrosis, with many. She was also the subject of a documentary named 65_Redroses, which was also the name of her blog. Eva wanted that the documentary based on her life should be a means to promote international awareness for cystic fibrosis, and encourage people towards organ donation. Her blogging also added to the cause, to a point that she would have letters, cards, and stuffed animals from Los Angeles to Poland, delivered in her hospital room.
Being a theater student at the University of Victoria, she received her degree at her hospital bedside when she was 25, briefly before she passed away. She was honored with the Doug Summerhayes award by the Canadian Cystic Fibrosis Foundation for her contribution towards CF. Not only this, she also received the Queen Elizabeth II Golden Jubilee Medal.
After her death caused by her body’s rejection to accept the lung transplant she underwent when she was 23, Eva left behind a legacy. She was waiting for another lung transplant when the complications overshadowed her fighting spirit and succumbed her to death at the age of 25. Her documentary was acquired by OWN (Oprah Winfrey Network) documentary club, with the additional footage of her death, completing Eva’s story to be shared worldwide.
She said the following line in her video entry – “This is the end of my life, but it’s not the end of my love.” Love, friendship, fun, and laughter is what Eva spread all throughout her life. Even when CF kept her isolated from the rest of the world, she created her own world through her blogs, inspiring millions of people and making their journey easy. She was an angel who shall never be forgotten.
“Tomorrow is a privilege, so live today like tomorrow isn’t happening.” – Frankie Jo Abernathy
Most of us would remember her for the punk rock music, piercings, and the love for Hello Kitty. She was among the cast of the popular MTV show Real World: San Diego in 2004, but she left the show midway due to some conflicts with her roommates, and because she felt homesick.
Abernathy was diagnosed with cystic fibrosis when she was 3 years old. Even during her stay in the show, she displayed the complications of CF, such as breathing difficulties and problems related to the immune system. Her disease was among the main highlights of the show, thereby generating national awareness about cystic fibrosis in the audiences.
Frankie dreamed of becoming an artist, was interested in tattoos, body piercings, punk music, and she also designed purses. She also appeared on a magazine cover in May 2005. It was a tattoo magazine called Prick. She did all that she loved, lived her life to the fullest, and passed away on June 9, 2007, at the age of 25. The school in which she studied Blue Springs High School, also set up a scholarship in her name.
“She was a different person for ‘The Real World’ realm, and I think she touched a lot of people and made an impact on a lot of people’s lives. That’s what you want when you have a child — you hope they do that. I wish it had been in a different way, but I am proud of her, and as I said, she got a lot of personal growth out of her experience, and she was very fortunate to have had the experiences she did.” – Abbie Hunter (Frankie’s mother)
This young 6-year-old boy is the son of former British prime minister Gordon Brown and his wife Sarah Brown – their third child. He was diagnosed with CF when he was 4 months old, in November 2006. Fraser’s diagnosis was a result of the routine screenings done for newborns. The diagnosis came as a shock to the family, but it was also an example of how beneficial these routine screening tests can be. The news of Fraser’s illness was intended to be kept private, but without the consent of the family, was immediately published in The Sun, leaving the Browns “in tears”.
Fraser was born as a healthy child, and in spite of having CF, was reportedly progressing like a normal baby. Regular health checkups are done to make sure that Fraser grows up to be a healthy adult, while the family trusts that advancements in the medical science will improve in the near future, making it possible for Fraser, and others with CF to live a normal and healthy life. The Telegraph stated a quote made by a spokesman saying –
“The NHS is doing a great job, and Gordon and Sarah are very optimistic that the advances being made in medicine will help him and many others, and they hope to be able to play their part in doing what they can to help others.”
This young and talented singer is counted among the most successful and popular artists in France. He gained international recognition and popularity after winning the fourth season of the reality TV show called Star Academy France in December 2004. He was also the first male contestant to win this show with 80% of the audience votes. After winning, he released various songs which were certified as platinum hits, making him the winner of many awards, and performing in various concerts and tours internationally.
Lemarchal was diagnosed with cystic fibrosis when he was 20 months old. However, this gifted performer never let that come in between his dreams. His passion and enthusiasm for music, and lifting dance made him win a rock ‘n’ roll dancing competition called Lifting France of Rock ‘N’ Roll when he was 12 years old.
After observing a deterioration in his health, Lemarchal took a break in 2007 to take some rest. He was on the waiting list for a lung transplant, and died due to health complications on April 30, 2007, at a young age of 23. After his death, an organization called Association Grégory Lemarchal was founded by his family to support other people with cystic fibrosis. Four days after his death, a program titled Grégory : La voix d’un ange was broadcasted in his remembrance, and funds were raised to support groups working for cystic fibrosis. Millions of euros were also raised through a show performed by the contestants of Star Academy, in honor and memory of Lemarchal. All these funds went to Association Grégory Lemarchal to help others with this disease, live a quality life.
“My parents made it seem like I was a “regular” kid. They were always on top of my treatments and pills but they also made anything related to my CF seem like it was no big deal, like it was normal. That was the key to my childhood.” – Gunnar Esiason
Gunnar Esiason is the son of retired American NFL player, Boomer Esiason, who is also a television and radio host, and a sports announcer. He was diagnosed with cystic fibrosis at the age of 2, when he was rushed to the hospital for extreme breathing difficulty. Though it was heartbreaking news for the family, they were determined to do everything possible to make sure that Gunnar lived a normal life. While Gunnar played sports, his family made sure that he got enough of the vitamins and salt that he needed to maintain a healthy balance. It was normal for him to carry medicines, sanitizer, and pancreatic enzymes, to his school along with his books. As he grew older, he was taught how to take responsibility of his physiotherapy, medications, and diet on his own, with the support of his family, of course.
His father, Boomer Esiason is also the founder of The Boomer Esiason Foundation, which works to aid funds for the research implemented to find a cure for cystic fibrosis. This organization is located in NYC, and has raised over $100 million dollars as of March 2, 2013. Over $2 million dollars have been given as scholarship grants to patients with cystic fibrosis. This foundation also supports various hospitals which include the Columbia Presbyterian In NYC with the Gunnar H Esiason Adult CF and Lung Program and the Cincinnati Children’s Hospital with the Gunnar H Esiason CF/Lung Center.
“I want to someday be a grandparent to both of my children’s kids. We’ll keep working to find a cure.” – Boomer Esiason
“Living with CF is like being in a battlezone during wartime. There will always be many tough challenges to face, but you just have to do your best and be prepared to keep on fighting. And remember that your fellow soldiers – family and friends – are always there to back you up.” – Jerry Cahill
Jerry Cahill is an active member of the Boomer Esiason Foundation (BEF) which works for research and support towards cystic fibrosis. He was diagnosed with CF in 1967, when he was 11 years old. At the time, it was very rare for someone with CF to even reach their teens. His parents were told that it would be unlikely for him to celebrate his 18th birthday. However, with the support of his friends and family, and with a disciplined and active lifestyle, Cahill continues to inspire many with CF, standing firm against all odds at the age of 56. He had always been an athlete, being inspired by his family, to have an active lifestyle in order to keep his lungs as clear as possible. He was into the apparel industry for 27 years, also continuing his active lifestyle by being a part of the New York Athletic Club. He left the apparel industry to volunteer for the BEF, which he was introduced to by Billy Heinzerling and Bob DiFazio – both being BEF Board Members – at a fundraiser organized by the New York Athlete Club.
Jerry made a major contribution to the foundation by launching the Exercise For Life Scholarship and Team Boomer-Fighting Cystic Fibrosis athletic program. He also manages the programs involving the scholarship and grants for transplant funded by BEF. Apart from this, he also launched a series of short videos called CF Wind Sprints, in which he tells people about the lifestyle tips that can help them cope with CF. He is also a guest speaker on various events organized for cystic fibrosis, in which he inspires people, taking his life as an example, to defeat the limitations of CF.
In April 2012, Jerry Cahill went through a lung transplant, which Cahill kept on postponing for two years. His lungs were replaced when the lung function came down to 23 percent. While most of the patients after a transplant would still be recovering, Cahill became an example of strength and determination when he finished the 2012 Boomer’s Run to Breathe 10K, only 3 months after undergoing his transplant. He admits that being physically active through exercising and sports has helped him defeat the disease. Even his physician says –
“I’ve known Jerry for 10 years, and because he was able to exercise and maximize his body, he’s delayed it and delayed it and pushed off the ravages of cystic fibrosis and got to where he is today.” – Joshua Sonett, MD
“It’s definitely scary, but also it gives me an opportunity to do everything now while I’m young. I’m doing ‘American Idol’ because this is my dream. I’ve always wanted to be on the show, that’s why I came here as soon as I got of age.” – Kayden Stephenson
In the process of living his dreams, Kayden participated in American Idol when he was 16, though he didn’t look his age. Call it one of the complications of CF, which hampers the growth of the body because of the body’s inability to absorb essential nutrients. This talented singer made millions of fans when he participated in the 12th season of American Idol. What was even more alluring was his love for life, his passion for singing, and the charming attitude that won the hearts of many celebrities, including Mariah Carey and Nicki Minaj, who said that Stephenson was a great inspiration to others, and even they were highly inspired by him.
“Thank you for being brave and sharing your story. No matter what happens on Idol, music inspires people and you inspire people.” – Wayne Rooney on Twitter
The above line was tweeted by Wayne Rooney, the famous English footballer who plays for the England National Team and Manchester United. He also said that Stephenson reminded him of a friend who died from CF. Rooney even invited Stephenson for a VIP trip to attend his match against Real Madrid. Rooney also tweeted to Stephenson, “Keep doing it, you will help a lot of people.”
Though Kayden was eliminated from American Idol, his hopes still remain high. He stated that he would be back next year, and continue to live his dreams. We salute his spirit!
Kenneth Keith Kallenbach was a famous member of the Howard Stern’s ‘Wack Pack’, a show of the 1990s. He is known for his attempts to blow smoke from his eyes. He was also a comedian, actor, and had a band called The Kenneth Keith Kallenbach Band.
He died due to pneumonia – a complication of cystic fibrosis – which he contracted during his stay at the Delaware County Prison. He was in custody, being accused of luring a 16-year-old girl to get into his car. While he pleaded that he wasn’t guilty, he was held under custody, eventually leading to his death at the Riddle Memorial Hospital.
“I think that people who know me, who really know me, don’t see me as someone who is sick. They see me as Laura, you know, who is a sophomore at Brown. It’s hard for them to imagine, you know, ‘Oh, she might not be here in a few years.’ They know I have CF. They know that it means that you get very sick and you die, but they see me and it’s hard for them to make it real – because they don’t want to, because no one wants to, because they want me to live forever, because I’m their friend.” – Laura Rothenberg
Laura was an American writer and an author of a book titled Breathing for a Living in which she describes her struggle with cystic fibrosis, and the complications that she had to encounter, which includes the double lung transplant. She also recorded an audio book called My So-Called Lungs: A Young Girl’s Diary of Living with Dying from Cystic Fibrosis, with the help of Joe Richman – an award-winning public radio reporter and producer. The audio book was aired on NPR on August 5, 2002, touching the hearts of various listeners. She also worked for raising funds for the Cystic Fibrosis Foundation along with her classmates. Also, she set up a fund to support a bronchoscopy suite at the hospital where she got her transplant done – at Children’s Hospital Boston. She died at the young age of 22, on March 20, 2003.
Laura was a people’s person, and she hated being alone. Her biggest fear was to be forgotten by people after she left the world. She recorded in her diary –
“I definitely think about after I’m gone. When I was younger, I used to try and plan my funeral, where I’d want it, how many people I’d want to be there, what it would be like. I’ve always been scared that people would forget about me. Eight years go by and, you know, someone who dies isn’t the first person you think of when you wake up necessarily. But I’ll find a way so that people won’t forget about me. You know, I’ll give friends things of mine that they’ll always have.”
Well, mentioning Laura in this list is definitely an indication that she is not, and will never be forgotten.
“I have had many tough racing and training days because of chest infections, but I battle through them because I love what I do and I am determined not to let CF stand in my way.” – Lisa Bentley
Lisa, a Canadian triathlete, was diagnosed with cystic fibrosis when she was 20 years old. But because she led an active and healthy lifestyle, she wasn’t symptomatic and had a lung capacity of a 100 percent, while other people with CF are likely to have lesser lung capacity. Since the 1990s, she has been participating in the Ironman race, a series of long-distance triathlon races organized by the World Triathlon Corporation, which includes a 2.4-mile swim, 112-mile bicycle ride, and 26.2-mile marathon, all without taking a break! She is regarded as one of the most successful triathletes of all times and an exceptionally talented runner, in spite of having to deal with the complications of CF! It takes longer for Lisa to overcome a chest infection (6 weeks, with a heavy dose of antibiotics), but regardless of that, she has been the winner of 11 Ironman competitions!
“Most people with cystic fibrosis wouldn’t be able to do one [Ironman], and I’ve been able to do 33, so I’m thankful for what I’ve been able to do” – Lisa Bentley
Lisa accredits sports and exercising for her achievements and her ability to cope with cystic fibrosis. “I was healthy for so long because of sports,” she says. “The reason I have diverted the illness is because I have worked my lungs every single day – even in the hospital.” She is a living inspiration to those dealing with the challenges of CF, and others as well. She is involved in charity and fund-raising events, and spreading awareness of exercising and sports to others with cystic fibrosis.
“My parents were told at my birth that a lot of kids don’t make it to double digits. But my parents are very optimistic and really backed me. I would not be where I am today without their support. I was never surrounded by those type of people who told me I couldn’t do this or that.” – Nathan Charles
Nathan Charles is a well-known Australian rugby union player, who was diagnosed with CF when he was 3 months old. Even though the doctors told his parents that he wouldn’t live past 10 years, they always encouraged him to do what he loved – playing sports! As a kid, he would never be confined indoors, but would always go out and play. If there was a party in the house, Charles said that his mother would always make him blow balloons, or engage in activities that included blowing, like playing a saxophone.
Charles realized that it was the active lifestyle and all the physiotherapy that he was made to do, that helps him live a healthy life today, at the age of 24, defeating the complications of CF to a great extent. Even being involved in a sports-related career makes him feel fortunate. He says –
“Now I’m fortunate enough to be in a professional environment. That substitutes having to do all the physiotherapy that I had to do as a kid. It’s the reason I am healthy.”
According to The Daily Telegraph, Charles consumes about 28 tablets a day, including 8 medicinal tablets, and the remaining to supply enough vitamins. Not many people were aware of the fact that Charles had CF. He wanted to keep this news confidential because he didn’t want people to judge him, or offer him sympathy because he was ill. He hates being sympathized with, or being remembered because he has CF. But now, he feels that he is in a position to make a difference to people who are fighting this condition. He said, “I want to do everything I can to raise awareness. The more funds I can raise the more research can be done and hopefully cures can be found.”
Nathan Charles is the national ambassador for Cystic Fibrosis Australia, delivering a powerful and inspirational message not only in Australia, but across the globe. He lives by his motto – “Believe in yourself. The only thing that can stop you is you” – and encourages others to do the same.
“I’ve got no choice, I can get up off my rear and go out and work or be at home in bed dying at age 45. It’s either live or die. With the goals, I’ve set for myself, there’s no way I can just sit around. I’ve got to do what I’ve got to do” – Nolan Gottlieb
Nolan Gottlieb is a former NCAA Division II basketball player, an assistant basketball coach at the Anderson University, and is currently working as a substitute teacher in Dublin, Georgia. He is known for his professionalism and strong work ethics. It was because of these qualities that he was promoted from the junior varsity team of Anderson, to the varsity team. He believes that CF doesn’t stop one from doing what one likes to do. In fact, he emphasizes that being physically active through exercise and a healthy diet, can actually make dealing with CF a lot easier. In this context he says –
“I wish there was a way to get my story out to other CF patients, I tell the younger kids with CF to stay as active as possible. That’s been the biggest thing for me.”
“I want someone somewhere to remember who Teresa Mullin was after I die.” – Teresa Anne Mullin
Teresa Mullin was a Harvard graduate and was serving as an executive editor of The Crimson in 1989. She also wrote a book titled The Stones Applaud: How Cystic Fibrosis Shaped My Childhood, describing her physical, emotional, and social experiences that came along with the genetic disease. She writes in her book, “Suddenly, at age 9, I left childhood behind me forever.”
She was diagnosed with CF at age 4, but didn’t realize the severe consequences of it till she was 9. During that time, when Mullin struggled with the complications of CF, there were not as many medical advancements as there are now. Mullin expressed a lot of disappointments and felt that the medical system in the United States was inadequate in treating her condition. With this belief, she moved to England, with the hope that the facilities there would help her get a healthy life through a lung transplant. She went to England on a visa, and tried looking for a job there, after applying for a citizenship. However, before she could get a transplant done, she died due to complications on May 9, 1991, in London. Her younger sister, Susan, also succumbed to death due to CF, eight years after Teresa died. While Teresa was 22 years old, Susan was 23 at the time of her death.
People knew her as one of the most courageous and toughest people to have ever existed. She considered cystic fibrosis to be the dominating factor in shaping her life. There were a lot of things that she wanted to do with her life, which included helping other people with CF and improving their lives. Nonetheless, she lived a life doing what she loved to do, making her friends and family remember her with pride and honor.
The lives of these famous people with cystic fibrosis are an inspiration to all of us, who in the midst of our assumed limitations, fail to realize that there is so much we can do with our lives, by valuing the blessings that we have. These names are an example, that all of us are blessed with our own unique gifts – gifts that can help us cope with our infirmities. These fighters realized, that if there is pain, there is also a cure, and though the cure couldn’t assure them with longevity as others, it indeed made them the ideal examples of living life with zest, passion, determination, and to live each and every moment without any remorse. They treated life as a gift, and cherished it to the fullest … are we doing the same?