Did you know Noonan Syndrome (NS) occurs in 1:1000-1:2500 live births? This puts the disorder in the same pool as Ogden Syndrome and KAT6A Syndrome, which are some of the rarest genetic conditions in the world.
Individuals with Noonan Syndrome have distinct facial structures. These include widely spaced eyes, smaller jaws, drooping eyelids, broad foreheads, and low-set ears that appear to face backwards. Other issues that come with this condition are heart defects and skeletal malformations.
If you want to know more, you’re exactly where you should be. This blog shines the spotlight on 12 famous people with Noonan Syndrome. Read on to discover their inspiring stories, struggles, and what sets them apart from those with Turner Syndrome.
12 Famous People with Noonan Syndrome
The list of famous people with Noonan Syndrome includes ex-soldiers, actors and actresses, athletes, and kids who are yet to choose their career paths.
J.R. Martinez
Former US Army soldier J.R. Martinez is among those living with Noonan Syndrome. This condition has seen him undergo surgery and bullying, which have nudged him to spread awareness about it.
Martinez’s struggles with Noonan Syndrome played a big role in building his career as a motivational speaker. Aside from that, he is also an actor and has bagged roles in shows like All My Children and Dancing with the Stars.
Tim Burton
Batman Returns’ director made it on our compilation of famous people with Noonan Syndrome. Like Martinez, Burton was pushed around by others because of this disorder, and he had a hard time making friends. Thankfully, it bore unexpected fruit.
Burton’s favorite way of dealing with bullying was art. This sparked his creativity, enabling him to become the legendary filmmaker he is today. Apart from winning multiple awards, including an Emmy, the film producer was awarded the Ordre des Arts et des Lettres (Order of Arts and Letters) by the French Minister in 2010.
Benjamin Cipriano
In 2017, the story of 16-year-old Ben Cipriano’s battle against Noonan Syndrome came out. At the time, he was a high school student at El Segundo High School in California, and he had just undergone heart surgery.
Sadly, Cipriano’s heart defect was only one of his many problems. As he confessed, other kids picked on him because they assumed he was mentally disabled, thanks to his unusual looks. This forced him to use humour as an escape. Growing up, Cipriano also had a hard time engaging in physical activity. Running a mile in P.E. class felt like climbing a mountain in flip-flops.
Impressively, the teen got straight As, despite missing up to eight weeks of school when he was recovering from heart surgery.
Mariska Hargitay
American actress and producer Mariska Hargitay is known to have Noonan Syndrome. Her struggles started when she was pretty young, as she lost her mother in a car accident at only three.
Against all odds, Hargitay has made a name for herself as one of the most talented players in the film industry. Many legal drama TV series lovers know her from NBC’s Law & Order: Special Victims Unit (SVU), where she plays the lead role of the tenacious detective Olivia Benson. It has won her many accolades, including an Emmy and a Golden Globe Award.
Michaela DePrince
Prior to her death in 2024, ballet dancer Michaela DePrince was in the limelight for living with Noonan Syndrome. This Sierra Leonean-American soloist also had vitiligo, which caused many people to call her the “devil’s child”.
Still, DePrince didn’t let her health problems clip her wings; she became the Dance Theatre of Harlem’s youngest member. Additionally, the dancer authored a book, appeared in the First Position film documentary, and raised $500,000+ for children in conflict zones.
Lizzie Armour
Lizzie Armour’s story, which is no secret to many, paints a vivid picture of Noonan Syndrome. She was diagnosed with the condition at the age of 7.
Before that, Armour’s parents couldn’t make sense of her health problems that included tummy bugs, digestive issues, and relentless coughs. When she was four months old, doctors discovered she had a hole in her heart.
Armour, who is about 4 ft 11 inches tall, experienced developmental issues, which made things even worse because bullies saw her as an object they could toy with.
In spite of all the challenges Armour has encountered while living with Noonan Syndrome, her resilience continued to shine. She studied German and Management at the University of East Anglia and built a career as a PA in the finance world.
Sarah Chalke
Actress Sarah Chalke is another famous individual living with Noonan Syndrome. You may have spotted her in popular comedy series like How I Met Your Mother and Scrubs, which proves the condition doesn’t limit anyone from achieving their dreams.
Chalke’s son Charlie has Kawasaki disease (KD) that leads to the inflammation of blood vessels and causes acquired heart disease in kids. There’s no specific test for the illness, which means diagnosing it is not a walk in the park.
Drew Thorstenson
Many people in Chicago know about Drew, who is the son of Katie Thorstenson. His Noonan Syndrome diagnosis came before his birth, so his mom knew he would experience various health issues when growing up.
When Drew was born, he had two heart issues, his growth rate was slower than that of normal infants, and he suffered from respiratory distress. To get help (and hopefully some answers), Katie went to the Noonan Syndrome Foundation (NSF).
Years ago, Katie also became an NSF board member. This enabled her to learn more about managing Noonan Syndrome and spread awareness about the disorder.
Lila Santili
Not everyone has a book written about her, but Lila Santili has been among the lucky ones. She was born with uncommon physical features, like a nuchal fold or too much skin in the back of the neck. This prompted her mother, Laura, to seek medical help.
After genetic testing, Lila was diagnosed with Noonan Syndrome. That, however, didn’t dull her lively spirit. A few years ago, Laura described her as a dance enthusiast whose creativity knows no limits.
To boost awareness about NS, her grandma, Millie Santili, wrote a book, Lila Lu: And the Things I Love to Do. It explores the things Lila lives for, such as whipping up a plate of pasta and riding her bike.
Jakob-Anthony Handley
Born in South Surrey in British Columbia, Canada, Jakob-Anthony Handly was diagnosed with Noonan Syndrome when he was only six months old. Over the years, he has had many symptoms of the condition, including droopy eyelids, a congenital heart defect, developmental delays, and bleeding issues.
At 13, Handley had already undergone 15 surgeries, and he was prepping to go under the knife again for eyelid surgery in 2022. His mother, Katie, told the Abbotsford News that if he didn’t do it, his eyelids would drop until his vision was blocked.
Handley’s story is proof that Noonan Syndrome can take a toll on a family’s financial health. A couple of years ago, his mother had to ask for donations to pay for a trip to see the right doctors in Calgary. Luckily, community members didn’t turn their backs on them.
Josiah Ives
Racing enthusiast Josiah Ives first came into the spotlight when he was only five after getting the chance to spend a day with Josef Newgarden, a popular American racing driver.
While Ives was having the time of his life with Newgarden, a small team from CENTURY 21 Scheetz, a real estate firm in Indianapolis, spruced up his room with race car-themed décor.
Yorke Parkin
Yorke Parkin, known for his love for skiing, has always shared his journey with Noonan Syndrome. He started having a rough time when he had a heart murmur at only 2 months. By the time Parkin turned two years old, he had developed undescended testicles, and he had to undergo surgery.
Another problem Parkin dealt with was delayed gross motor skills. At 18 months, he could barely maintain a proper sitting posture while his peers were either crawling or walking. Furthermore, he had dyslexia and lacked enamel on his teeth.
Nevertheless, Parkin has always strived to get the best out of his life. His passion for skiing saw him win a competition organized by the Special Olympics. He also indulges in many other extracurricular activities, including dancing.
Facts About Famous People With Noonan Syndrome
Because of its rarity, many people don’t know much about Noonan Syndrome. Well, we’re here to change that. Here are several facts you should know about this condition and the individuals living with it:
- They can lead long and healthy lives.
- They are not contagious because Noonan Syndrome is not transmitted through contact.
- There’s no known way to prevent Noonan Syndrome.
- Noonan Syndrome is named after the cardiologist who discovered it in the 1960s, Dr. Jacqueline Noonan.
- Noonan Syndrome occurs in individuals of all races.
Noonan Syndrome vs Turner Syndrome
Many people confuse Noonan Syndrome with Turner Syndrome because individuals with the disorders may have similar physical features and medical problems, such as webbed necks and low-set ears.
But are these conditions the same? Here’s a comparison table to help you understand the difference between Noonan Syndrome and Turner Syndrome.
| Feature | Noonan Syndrome | Turner Syndrome |
| Cause | Mutations in genes like RAF1 and SOS1 | Partial or missing X chromosome |
| Sex Affected | Males and females | Females only |
| Inheritance | Can be inherited | Not hereditary |
| Fertility | Many people with NS are fertile, but some are infertile | Most individuals with Turner Syndrome are infertile |
Supporting Famous People with Noonan Syndrome
As we’ve seen, the list of famous people with Noonan Syndrome is pretty short. Nonetheless, these individuals have demonstrated impressive resilience. Most of them have gone out of their way to spread awareness of the condition and debunk myths about it.
Curious to know how you can be there for a person living with Noonan Syndrome? Start by including them in social events to prevent them from feeling alienated from the world. Celebrating their talents and encouraging them to pursue their dreams is an excellent idea, too. Making them seen and valued can do wonders for their personal and professional lives.
Additionally, refrain from overprotecting people with Noonan Syndrome. Instead, cheer them on as they try to be independent and only offer your help when necessary.
Famous People with Noonan Syndrome: FAQs
Q1: What celebrity has Noonan Syndrome?
A number of celebrities live with Noonan Syndrome, including film producer Tim Burton and actor J.R. Martinez.
Q2: Is Noonan Syndrome Curable?
No, Noonan Syndrome doesn’t have a cure, but proper medical care can help manage nearly all of the condition’s symptoms.
Q3: Which emotional problems are associated with Noonan Syndrome?
Famous people with Noonan Syndrome struggle to express their emotions due to communication issues. They may also suffer from attention deficit or hyperactivity disorder and mood swings.
Q4: What’s the average height of a person with Noonan Syndrome?
Famous people with Noonan Syndrome are usually between 5ft and 5ft 3 inches tall. However, those who undergo growth hormone therapy can be as tall as individuals without the disorder.
Q5: Can people with Noonan Syndrome have kids?
Yes, famous people with Noonan Syndrome have kids. That said, it’s worth mentioning that they may have difficulties procreating as many males have undescended testes, while some females experience delayed puberty.
Q6: Which gender is affected by Noonan Syndrome?
Both males and females can suffer from Noonan Syndrome.
Q7: Do famous people with Noonan Syndrome have autism?
Although not all individuals with Noonan Syndrome are autistic, clinical studies show that they are at risk of autism spectrum disorder (ASD).
Q8: Does Noonan Syndrome affect an individual’s intelligence?
Noonan Syndrome doesn’t affect a person’s intelligence, but it may cause learning disabilities and other mental issues.
Q9: Can someone with Noonan Syndrome look normal?
People with Noonan Syndrome have varying physical traits. While some appear normal, others may have thick, webbed necks, eyes that are spaced apart, and larger foreheads.
