Three generations. One shared journey. A legacy of strength.

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by Susan Bolton

Co-Founder of IM Strong Foundation

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The story of our family is one marked by confusion and a persistent necessity: the need to understand a rare condition that weaves through our bloodline. It began not with clarity, but with a misdiagnosis, a common hallmark of rare disease journeys.

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The Beginning: No Diagnosis, No Answers

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My own journey began at birth, I was born with three tumors that were removed in my infancy.

Growing up, the origin of these growths remained a mystery. At the time, there was no name for what had occurred, and the path was obscured by limited medical knowledge. When I moved into adulthood, I was unaware of the potential seriousness of the genetic thread I carried - but the true familial pattern became undeniable when the next generation arrived.

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The Second Generation: The Echo of Concern - The Pattern Emerges

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The true weight of this condition surfaced when my first child was born. At just 29 days old, after a

lump was discovered in his hand and another in his leg, he faced surgery. A biopsy occurred after a

period of heightened anxiety to reveal the truth that would define our family’s struggle: One tumor

was removed, but another, due to its invasiveness, remained. This was our moment of retrospective

discovery. We realized my own infant tumors and my son’s symptoms were the same underlying,

little-known condition. When my daughter arrived with tumors on her cheek and arm, coupled with a

mysterious platelet deficiency, monitoring became our routine. Life moved forward, but we lived with

the knowledge that this rare condition was an ever-present, unpredictable factor.

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Surgical Complexity and a Critical Misstep

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When my son entered his teenage years, the complexity of IM grew evident. We had previously

believed these tumors only occurred in infancy; we did not yet understand that they could reappear

or persist throughout life.

The most frightening chapter occurred during my son’s early 20s, when a tumor in his oral cavity was

devastatingly misdiagnosed as Stage 4 squamous cell cancer. It took the astute wisdom of a

pathologist to correct the diagnosis back to a benign myofibroma. This close call solidified our

family’s understanding of the dire need for expertise and the danger of misdiagnosis in the rare

disease space.

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The Third Generation: A Quest for Knowledge - From Confusion, To Action

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With the birth of my daughter’s children, the story evolved, moving from mere confusion to a clear quest for knowledge and community. When her son was born with tumors in his leg & head (2020), the medical world had advanced. A watch and wait approach was recommended, reflecting a better understanding of the conditions natural course.

However, when her second son arrived (2024), he presented with a far more serious, multi-centric form, involving several tumors and a greater systemic impact. Our family had only experienced solitary tumors, never visceral involvement - therefore this case in our family presented a new, urgent need for more research.

 

The Legacy of Necessity

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Across three generations, we have navigated an often-bewildering medical landscape of initial

confusion, devastating misdiagnoses, and the constant, critical need for more information.

This journey has culminated in a clear mission: to move beyond being passive recipients of care.

Our experience has forged a powerful, necessary drive to develop a community—a resource to provide support, understanding, and critical information for other families confronting the challenging reality of Infantile Myofibromatosis.

 

Families like ours shouldn’t have to navigate this road alone, and children like ours deserve more answers than what currently exists. That’s why we created the IM Strong Foundation. Our mission is to support families through emotional connection, empower researchers with patient data to drive better treatments, and spread knowledge so that no parent ever feels isolated when facing an IM diagnosis. What began as one family’s story has grown into a movement of resilience. Together, we believe we can build a future where families affected by Infantile Myofibromatosis have access to the support, information, and treatments they need — and where every child has the chance to thrive. 

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Because rare doesn't mean alone, together we are stronger than IM.