Milly Shapiro & CCD: What You Need To Know About Her Condition

Prof. Ross Stoltenberg I 11 May 2025

Is it possible for a rare genetic condition to define an individual's identity and contribute to their success? For Milly Shapiro, the answer is a resounding yes, as she navigates the world of entertainment while living with cleidocranial dysplasia (CCD), a condition that has shaped her life and career in remarkable ways.

Cleidocranial dysplasia (CCD) isn't just a medical diagnosis; it's a complex genetic condition that influences the formation of bones and teeth. CCD's impact extends to various parts of the body, including the skull, face, spine, collarbones, and legs. Individuals with CCD may experience a range of physical variations. Some common features include underdeveloped or absent collarbones, which can allow the shoulders to come closer together, and altered bone density, potentially leading to fragility. Dental development is often affected, with delayed eruption of adult teeth and the presence of extra teeth. In some cases, the spaces between the bones of the skull may take longer than usual to close.

Category	Details
Full Name	Amelia Shapiro
Born	July 16, 2002, Tampa, Florida, USA
Age (as of October 26, 2023)	21 years old
Occupation	Actress, Singer
Known For	Role of Charlie Graham in the film "Hereditary," and originating the role of Matilda Wormwood in the Broadway production of "Matilda."
Health Condition	Cleidocranial Dysplasia (CCD)
Notable Works	"Hereditary" (2018), "Matilda the Musical" (Broadway)
Other Notable Information	Her sister is Abi Monterey.
Reference	Wikipedia

In 2020, Milly Shapiro publicly discussed her diagnosis of cleidocranial dysplasia (CCD), a rare genetic condition that affects bone and teeth development, as reported by Johns Hopkins Medicine. This openness provided insight into her life and the challenges she faces, while also highlighting her resilience and determination. CCD's impact is not just physical; it has shaped Shapiro's perspective on beauty, acceptance, and the entertainment industry. In a world often fixated on conventional standards, Shapiro has disregarded the notion that visibility in entertainment must conform to traditional norms.

Born in Tampa, Florida, on July 16, 2002, Milly Shapiro's journey began like any other child. However, she was born with a rare genetic condition known as cleidocranial dysplasia (CCD), which was later confirmed. This condition affects the development of bones and teeth. Milly's mother's heritage passed on this health condition to Milly and her older sister. It's a hereditary condition impacting the teeth, the facial structure, spine, legs, and collarbones of an individual. This has led to a distinctive appearance and has been a central part of her narrative.

Shapiro's unique features, stemming from CCD, have not hindered her career. In fact, they have, in some ways, set her apart, contributing to her striking on-screen presence and drawing curiosity from audiences. While the impact of CCD varies from person to person, Shapiro's case is evident in certain physical traits. Her appearance has sparked curiosity and questions, yet it has also allowed her to stand out in an industry that often prizes conformity.

Shapiro's journey to the forefront of entertainment began when she was discovered by a talent agent at the age of ten. She moved to New York City to pursue her dreams and has achieved remarkable milestones, including her noteworthy performance in the horror film "Hereditary," where she played the role of Charlie Graham. Her portrayal was chilling and memorable, solidifying her position as a talented actress.

Moreover, Shapiro originated the role of Matilda Wormwood in the Broadway production of "Matilda the Musical," showcasing her vocal talent and stage presence. This success further demonstrated her versatility and appeal to a wide audience. While it is not known the exact net worth, salary, and income of Milly Shapiro, it is assumed that Shapiro's career in acting and singing has brought her good financial success.

CCD also affects other aspects of her physical appearance. The bones of those affected might be formed differently or might be more fragile than normal, and certain bones such as collarbones may be absent. Some individuals with CCD may have small, irregular teeth and sometimes, partly or completely missing collarbones, a narrow pelvis and a shorter stature. The spaces between the bones of the skull may take longer than expected to close.

Shapiro's story provides a compelling example of how individuals can navigate challenges and redefine societal norms. Gaten Matarazzo, who plays Dustin Henderson in the popular series "Stranger Things," also lives with cleidocranial dysplasia. Both actors have contributed to raising awareness about the condition and demonstrating that it is possible to succeed and thrive despite physical differences.

Shapiro's health condition is a significant aspect of her life, but it does not define her. Instead, it is an essential part of her identity. Shapiro's story is a testament to the power of self-acceptance, resilience, and the ability to embrace individuality.

Milly Shapiro has a skeletal condition known as cleidocranial dysostosis. This rare disease affects her bone structure, which can lead to collarbone and cranium deformities. Milly and her older sister got this type of health condition from their mothers heritage.

The entertainment industry can be challenging, with a narrow definition of beauty. However, Shapiro's presence challenges those conventional standards, proving that diversity and uniqueness are assets. By sharing her story, Shapiro becomes a role model, encouraging others to embrace their differences and pursue their dreams.

Shapiro's openness about her CCD has not only helped raise awareness about the condition but also started a conversation about acceptance. It has also helped people understand that everyone is different and that is okay. Milly Shapiro's story shows that everyone is unique.

Milly Shapiro is an American actress and singer. She is widely known for playing the role of Charlie Graham in a horror film called "Hereditary." Shapiro has received significant attention for her performance in the 2018 horror film "Hereditary" and the broadway production of "Matilda." Shapiro was born on July 16, 2002, in Tampa, Florida, United States of America. She is 19 years old as of 2021. Through her acting and singing career, Milly Shapiro has made a mark on the entertainment industry, showcasing her talent and resilience.

In summary, Milly Shapiro's journey is a testament to resilience, self-acceptance, and the power of embracing one's unique attributes. Her openness about her cleidocranial dysplasia (CCD) and her successful career in the entertainment industry have made her a role model, promoting diversity, and redefining beauty standards.