From the moment she entered the world, Finlee June’s journey has been different from that of many other children. Born with Treacher Collins syndrome, a rare genetic condition affecting the development of bones and tissues of the face, she faced serious medical challenges during the earliest weeks of her life.

Finlee spent six weeks in the neonatal intensive care unit (NICU) after birth and underwent several medical interventions during her first months. For her parents, those early days were filled with uncertainty and fear as doctors worked to protect their daughter’s health and help her overcome the complications associated with her condition.

Treacher Collins syndrome can affect the development of the cheekbones, jaw, ears and other facial structures. Some children can also experience problems involving the airway, feeding, vision and hearing. Despite the visible differences associated with the condition, intellectual development is typically normal.

A Childhood Filled With Medical Challenges

For Finlee’s family, the beginning of her life required constant medical attention. Her time in intensive care was only the start of a longer journey involving specialized care and follow-up appointments.

Children with Treacher Collins syndrome can require care from multiple specialists depending on the features and severity of their condition. Medical management may involve craniofacial specialists, ear, nose and throat doctors, audiologists, dentists, speech professionals and other specialists working together.

One of the challenges associated with Treacher Collins syndrome is hearing loss. Differences in the development of the outer and middle ear can interfere with the way sound reaches the inner ear. Medical literature has documented a high frequency of hearing difficulties among children with the syndrome.

Finlee uses hearing aids to help her hear better. Hearing technology can be an important part of supporting children with hearing loss, and the CDC notes that hearing aids can help children make better use of their available hearing and support the development of communication skills.

More Than Her Diagnosis

As Finlee has grown, her life has become about much more than hospital visits and medical procedures.

Her mother frequently highlights her daughter’s strength, happiness and personality, encouraging others to look beyond Finlee’s physical differences and see the child underneath them.

That message is important because Treacher Collins syndrome affects appearance, but it does not define a person’s personality, intelligence or ability to experience joy. MedlinePlus notes that children with the condition typically grow into functioning adults with normal intelligence.

For Finlee’s family, sharing her story is also a way of helping others understand that children with facial differences deserve the same kindness, friendship and opportunities as every other child.

Learning to See the Person, Not the Difference

People may notice Finlee’s facial features or hearing devices before they notice anything else. Her family hopes that those differences will not become the first or only thing people see.

Behind the medical diagnosis is a little girl with her own personality, emotions, interests and dreams.

Her story also highlights the importance of early and continued support for children with hearing loss. According to the CDC, hearing difficulties can affect speech, language and social development, while early intervention can improve a child’s chances of reaching their communication and developmental potential.

Finlee’s journey has not been easy. Her parents have had to navigate intensive medical care, uncertainty and the ongoing needs associated with a rare genetic condition. Yet through it all, their daughter continues to grow, smile and show the personality her mother proudly celebrates.

Her story is ultimately not only about Treacher Collins syndrome.

It is about a little girl who fought through a difficult beginning, a family that stood beside her, and a simple reminder for everyone who meets her: a difference in appearance does not make a person any less deserving of respect, kindness and love.

Sources:

• GeneReviews / NCBI Bookshelf — Treacher Collins Syndrome: medical information on the condition, complications, hearing loss and multidisciplinary treatment.
• Centers for Disease Control and Prevention (CDC) — Hearing Loss in Children: information on childhood hearing loss, early intervention and hearing devices.
• MedlinePlus — Treacher Collins Syndrome: overview of symptoms, hearing difficulties, treatment and prognosis.
• PubMed — Ear Malformations, Hearing Loss and Hearing Rehabilitation in Children With Treacher Collins Syndrome: research on ear abnormalities and hearing rehabilitation.