Famous people with Noonan Syndrome make up an unusual and fascinating group. Intriguingly, some notable figures have lived and thrived while managing this genetic condition. Although it doesn’t define them, it adds a layer to their lives and accomplishments. Personalities in the limelight, like iconic Canadian sprinter and para-athlete Earle Connor, inspire legions of fans despite their Noonan Syndrome diagnosis.
This genetically diverse disorder is presented through various physical characteristics, such as distinctive facial features, short stature, and congenital heart defects. While the disorder poses various challenges, celebrated individuals with Noonan Syndrome continue to showcase resilience, determination, and a flair for greatness in their respective fields.
Discover some famous people with Noonan Syndrome.
Yorke Parkin
Yorke Parkin is a lively 14-year-old skier from Revelstoke, with an extraordinary story beyond the ski slopes. Yorke lives with Noonan Syndrome, a genetic disorder that presents unique challenges in his life. Despite this, his love of speed and racing excitement is evident. Eight years of skiing have helped develop his fondness for the sport and overcoming obstacles, supported by the Revelstoke Ski Club.
Yorke’s commitment can be seen in his daily routine, skiing four times a week and visiting the gym three to four times. Besides skiing, he enthusiastically participates in various Special Olympics sports, showcasing persistence and dedication. Recently, Yorke emerged victorious at the Special Olympics BC Alpine Skiing Regional Qualifiers, propelling him to the Provincial Games.
More than just a skier, Yorke is a source of inspiration as he defies expectations and embraces his capabilities amid the distinct challenges Noonan Syndrome presents. His journey encapsulates the true essence of the Special Olympics: promoting connections and celebrating individual tales of overcoming adversity and achievement.
Lila Santilli
Lila Santilli, a four-year-old with Noonan Syndrome, is the main character in a book called “Lila Lu and the things I love to do.” The book showcases her lively attitude towards life, even with the challenges of this rare genetic disorder. Noonan Syndrome affects normal development in many body parts, so Lila needs speech therapy and other services.
Her mom, Laura Santilli, stresses that while Lila has Noonan Syndrome, it doesn’t define her. This surprise Christmas gift has quickly become Lila’s favourite book, celebrating her incredible spirit and raising awareness about Noonan Syndrome. Some proceeds from book sales support health initiatives for autism spectrum disorders and other genetic disorders.
Drew Thortenson
Katie Thortenson, a Chicago mom, shares her experience raising her son, Drew, who has Noonan Syndrome. Drew was born with two heart problems: Atrial Septal Defect (ASD) and mild Pulmonary Valve Stenosis.
During Drew’s three-month hospital stay, the family learned more about Noonan Syndrome. Afterward, Katie turned to the Noonan Syndrome Foundation (NSF) for help and information. Attending foundation conferences and talking with experienced doctors and parents gave crucial insight into Drew’s care.
Now an NSF Board member, Katie highlights the importance of raising awareness about Noonan Syndrome and the difficulties families face due to limited medical understanding. By promoting early diagnosis and education, Katie aims to improve medical care for kids living with Noonan Syndrome, ensuring they get timely help that can save lives.
Today, at two years old, Drew is getting through growth hormone treatment and making progress – a source of hope and normalcy for his family.
Lizzie Armour
Lizzie Armour, now in her mid-40s, tells her inspiring story of living with Noonan Syndrome. She faced health issues early in life, such as a hole in her heart. Yet, Lizzie’s strong will and loving family helped her enjoy an active life.
At 4ft 11in tall, Lizzie runs marathons and joins a running group, displaying her toughness and spirit. Her parents, Diana and Chris, dealt with Lizzie’s uncertain health during her younger years, marked by delayed growth and various health problems. Still, their optimism and encouragement played a crucial role in Lizzie’s journey.
Lizzie’s childhood involved frequent hospital visits, diagnostic tests, and no definite doctor answers. Despite the difficulties, her parents stayed hopeful, and Lizzie’s resilience became more apparent as she aged. The family confronted the mysteries of Noonan Syndrome and its different symptoms while finding help for Lizzie’s development.
Benjamin Cipriano
Sixteen-year-old Benjamin Cipriano, a student at El Segundo High School with Noonan’s syndrome, kept getting straight A’s even after missing two months of school because of heart surgery at Children’s Hospital Los Angeles.
Ben’s surgery was a difficult two-hour operation to fix the narrowing above his aortic valve and valve leakage. It was discovered that he had only one coronary artery—an uncommon condition. After his surgery, Ben experienced four cardiac arrests, but he recovered amazingly well, showing his strength and never-give-up attitude.
Living with Noonan’s syndrome, which causes unique facial features and heart issues, Ben has faced many difficulties in his life. People mistakenly judged him based on his looks. But Ben has kept a sense of humour and positivity through it all.
He uses humour to deal with life’s challenges and is backed up by his willpower and Dr. Brandy Hattendorf, the cardiologist who diagnosed him four years ago.
Jakob-Anthony Handley
Jakob-Anthony Handley, a 13-year-old from South Surrey, has the community supporting him for his upcoming doctor’s appointment in Calgary. His mom, Katie Handley, asked for help with the trip costs, and the community responded by donating bottles and cans. This helped ease the financial stress for the family, especially covering most gas expenses.
The next surgery is significant for Jakob-Anthony since it will address his droopy eyelid, a major symptom of Noonan syndrome. If not treated, it could cause vision problems and lead to blindness. The syndrome also causes unique facial features, heart problems, blood clotting issues, and growth difficulties.
Jakob-Anthony was diagnosed at six months old when a geneticist was finally available. The support from the community means a lot to the family as they face an uncertain future, which may include more heart surgeries.
Josiah Ives
Five-year-old Josiah Ives from Indianapolis, diagnosed with Noonan Syndrome, had an unforgettable day at the 500 Festival Parade with race-car driver Josef Newgarden. Josiah didn’t know about the surprise until that morning, and he got to ride with Newgarden in the parade.
Afterward, he returned to find his bedroom transformed into a racing theme. Century 21 Real Estate, Easter Seals, and Carpenter Fisher Hartman Racing worked together to make this happen for Josiah.
A passionate racing fan, Josiah high-fived Josef Newgarden and got a personalized autograph on his upgraded race car bunk bed. This heartwarming event showed the community’s support and made Josiah’s day extra special while creating lasting memories for the young boy with Noonan Syndrome.
