My name is Maddie, or the Miraculous Miss Maddie as I am often referred to. I am a charming, determined, and happy three-year-old, blessed with a fraternal twin sister, Kellie, and a five-year-old brother, Colin.
At 15 months of age, I was diagnosed with Angelman syndrome (AS), a rare neuro-genetic disorder occurring in one in 15,000 births or 500,000 people worldwide resulting from a loss of function of the UBE3A gene on the 15th chromosome. Angelman syndrome is often misdiagnosed as autism, cerebral palsy, or Prader-Willi syndrome due to similar presentation and symptomatology. Several characteristics of AS include developmental delays, speech impairment, recurrent epilepsy, severe sleep disturbances, gastrointestinal issues, and problems with balance and movement. Despite all these symptoms, most individuals with AS have a bright, happy, and smiling demeanor.
When my parents received my diagnosis, the genetic counselor focused on all the things I can't or won't do. Little attention was given to the possibilities, the hope of my future, my family's future, and the future of other individuals facing a rare disease diagnosis.
Since diagnosis day, January 2, 2020, my family and I have been committed to turning the cant's into cans. I am happy to report that despite being told I may never walk, I took my first steps in April of 2021. Despite being told I may never communicate, I not only communicate with my eyes and my actions, I am now saying "mama" and I am starting to use an iPad to purposefully communicate. Despite being told that my cognitive abilities would be comparable to an 18-month old, I continue to defy these odds. I have an indescribable and immeasurable appreciation for the incredible opportunities in Kansas City for kids like me, kids with different needs. Thanks to these organizations, there will be no label placed on what I can and what I can't achieve.
While navigating a rare disease is challenging, I am incredibly fortunate to have a diagnosis. And my diagnosis, Angelman syndrome, has gained immense attention over the past two years due to an overwhelming and amazing commitment to research and ongoing clinical trials towards meaningful treatment and a cure. Scientists now say it is not a matter of if I get a treatment, but when (see The Foundation for Angelman Syndrome Therapeutics for more information).
My community, family and I are incredibly excited and hopeful for what is on the horizon for children living with Angelman syndrome and other rare diseases. We are launching Maddie's Mission to raise awareness about Angelman syndrome while supporting local organizations that have enabled me to achieve to the best of my abilities. It is our sincere hope that every child has this same opportunity.
Maddie's Mission is dedicated to transforming limitations into possibilities for individuals with Angelman syndrome and other special needs. Through awareness, education, and advocacy, we empower families to see beyond diagnoses and embrace a journey of hope, growth, and achievement.
Our Vision: A future where no family faces a rare neurological diagnosis without the support, resources, and hope they need to move forward.
Core Values
- Hope — Believing in what's possible, even when the path is hard
- Empowerment — Giving families the tools, knowledge, and support to advocate for their child
- Access — Closing the gaps between the care that exists and the care families can actually reach
- Inclusion — Creating opportunities for full participation in life
- Determination — Turning limitations into possibilities, one family at a time
Our Commitment
- Funding direct support — equipment, therapies, and resources that families need today
- Investing in research and clinical care that advances diagnosis and treatment
- Empowering families to navigate complex systems and advocate for their loved ones
- Building and sustaining specialized care in Kansas City for children and adults with rare neurological conditions
- Connecting our community to national resources, advocacy, and the broader rare disease movement
Through Maddie's inspirational story, we demonstrate that with love, determination, and support, extraordinary achievements are possible. Together, we can create a future where every person with special needs has the opportunity to discover their own miraculous potential.
"Turning Can't into Can - One Miracle at a Time"
How We Create Impact
Maddie's Mission funds at the intersection of urgency and possibility. We focus our resources in three areas, each one essential to the families we serve.
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Daily Life & Direct Support - Stability comes first. Too many families are waiting on insurance decisions or lengthy waitlists — or simply can't access care because the right specialists don't exist in their community. When those barriers are removed, families can focus on what matters most — connection, growth, and everyday life.
We fund:
- Adaptive devices including safety beds, mobility tools, and home supports
- Access to therapies that aren't covered by insurance or aren't available locally
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Education & Family Empowerment - A rare disease diagnosis comes with a steep learning curve. Families suddenly find themselves navigating medical systems, insurance decisions, school plans, and clinical options — often without a guide. We believe informed families are powerful families. When a parent learns to advocate for their child, they change their own story. And then they help change the story for the next family in line.
We fund:
- Support for navigating complex systems — including IEPs, Medicaid, and care coordination — with confidence
- Scholarships for families to attend trainings, conferences, and community-building events
- Support to start family-led initiatives, advocacy efforts, and nonprofits
- Healthcare Innovation & Hope - The rare disease community cannot wait for the healthcare system to catch up on its own. We fund forward-looking work that expands access to high-quality care across the entire lifespan — because every family deserves a future with more answers, better treatment, and real hope.
We fund:
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- Innovative therapies and treatments not yet available locally
- Clinics that specialize in rare neurological disease care
- Research that drives better outcomes and faster diagnoses
"Turning Can't into Can - One Miracle at a Time"
