Raise awareness
Help more families and healthcare professionals recognize Perry syndrome and its breathing risks.
Our family story
A family’s experience, turned toward hope
The Perry Syndrome Foundation was created by Maria Romo, her sister, and her nieces to turn their family’s experience with Perry syndrome into awareness, connection, and support for families around the world.
From Maria
My name is Maria
I was born in Bogotá, Colombia, and now live in Florida. My family’s journey with Perry syndrome began with my mother, who lived with this rare and devastating disease for many years before she passed away in 2015.
Because Perry syndrome is exceptionally rare, finding an accurate diagnosis was a long and difficult road. We spent years living with uncertainty, looking for answers, and trying to understand what was happening to someone we loved.
Our family created this foundation so that others do not have to feel as alone or uninformed as we once did.
The search for answers
A turning point for our family
During this journey, our family connected with Dr. Zbigniew Wszolek at Mayo Clinic. With support from a grant, members of our family were able to travel abroad and take part in a study with him. The study helped confirm our mother’s diagnosis and gave us a clearer understanding of Perry syndrome.
Dr. Wszolek also shared important information about the condition with physicians in Colombia. This connection gave our family answers that had been so difficult to find and helped the doctors caring for our mother understand what she was facing.
Across generations
Perry syndrome has touched many lives in our family
My uncle died in 2001 after being misdiagnosed. Two of my aunts and another uncle also lived with this condition and died in recent years. These are our family’s experiences as we remember and understand them.
We know firsthand the uncertainty, fear, and challenges families face when living with a rare disease and searching for answers. Every loss has deepened our commitment to making the path less isolating for the families who come next.
A meaningful breakthrough
A step that gave our mother more independence
Her published case was the first reported successful use of diaphragm pacing in a person with Perry syndrome. For our mother, the breathing pacemaker helped preserve her independence and improved her quality of life during her final years.
Her experience was published as a single case report. It is an important part of her story, but it does not show that diaphragm pacing is safe, effective, or appropriate for every person with Perry syndrome. Breathing support requires individual assessment by experienced specialists.
Read the published case report and its limitations →Our mission
Turn experience into awareness, support, and hope
Our mission is to raise awareness of Perry syndrome, share our family’s story, connect families with reliable and up-to-date information, and support people affected by this rare condition around the world.
We believe knowledge can bring hope, connection can bring strength, and every family deserves access to information that may help them better understand their journey.
Share reliable information
Make medical research and practical guidance easier to find, understand, and discuss with care teams.
Build connection
Create a place where families can find support and know that others understand what they are facing.
Why we continue
In honor of the family members we have lost
Through this foundation, we hope to honor our mother and the members of our family we have lost, while helping create a future where families affected by Perry syndrome can find answers, support, and a community that understands.