Stylist and former television personality Emily Bustamante, widely known as Emily B, has opened up about her youngest daughter’s health journey in a deeply personal social media post shared on World Autism Awareness Day.
Bustamante, who has been in a long-term relationship with rapper Fabolous, revealed that the couple’s daughter, Journey Isabella, is autistic, non-verbal, and was born with PHACE syndrome a rare congenital condition that affects a very small number of children worldwide.
A private chapter made public
For a long time, Bustamante kept this part of her life away from public view. Her decision to speak out was not born of shame, she made clear, but from a deeply held belief that certain chapters of life are sacred and deserve to be protected until the time feels right. World Autism Awareness Day, observed annually on April 2, became that moment for her.
In her Instagram post, she described the full scope of what Journey lives with daily autism, non-verbal communication, sensory processing challenges, and the complexities that come with PHACE syndrome. She wrote with raw honesty about the fear, the learning curve, and the emotional growth she experienced as a mother navigating a path she had not anticipated.
What is PHACE syndrome?
PHACE syndrome is a rare congenital condition typically identified by a large infantile hemangioma a type of birthmark on the face, scalp, or neck. The acronym describes the range of abnormalities that may be present: posterior fossa brain malformations (1), hemangioma (2), arterial anomalies affecting blood vessels in the brain (3), cardiac defects (4), and eye abnormalities (5).
The condition is diagnosed more frequently in girls than in boys, and its effects can vary widely from child to child. Some children experience developmental delays, neurological complications, or vision and heart-related challenges, making early diagnosis and ongoing specialist care essential.
Because it is so rare, many families receive the diagnosis with little community support or readily available resources a reality that clearly shaped Bustamante’s resolve to raise visibility around it.
The emotional weight of the journey
Bustamante described the past years as filled with moments that tested her strength in ways she never anticipated. Yet running through all of it, she emphasized, has been an overwhelming sense of love for her daughter. Her words painted the picture of a mother who has had to grow, grieve, and rise often all at once while remaining fully present for a child who needs her most.
That kind of honesty is part of what makes her message resonate beyond celebrity circles. Millions of families across the country are raising children with autism and complex medical needs, and many of them do so without public platforms or community resources.
Building a foundation for others
Alongside her personal disclosure, Emily B announced the launch of the A Special Journey Foundation, a nonprofit effort aimed at providing advocacy, awareness, and community support for families in similar circumstances. The foundation is designed to serve as a gathering point a place where parents, caregivers, and supporters can connect, share resources, and feel less alone in what can often be an isolating experience.
The initiative reflects a clear shift from private grief to public purpose, a move that many advocates say is one of the most powerful things a parent in her position can do.
Support from family
Fabolous, who shares two sons with Emily B in addition to Journey, responded to her post with a message of affirmation and love. The family also includes Taina Williams, Emily B’s daughter from a previous relationship, who has grown into a public figure in her own right.
As Autism Acceptance Month continues through April, Emily B’s decision to step forward adds another voice to a growing chorus of parents demanding better understanding, more resources, and genuine inclusion for children who experience the world differently.
