Mia's Story: A Little Warrior With Big Impact – Living with Trisomy 18 (Edwards Syndrome)

Born weighing just 3 lbs 4 oz, Mia was a tiny warrior from the very beginning. At only three days old, her family received the life-changing diagnosis: Trisomy 18, also known as Edwards Syndrome.

Doctors explained the difficult reality. Many babies with this diagnosis face several medical challenges, and Mia’s chances of surviving beyond infancy were estimated to be 5-10%. 

But her family saw something else – a fighter. From that moment on, the family made a promise: they would fight alongside her every step of the way.  

A Medical Journey Defined by Strength 

In her first months of life, Mia faced challenges that most children will never experience

By just four months old, she had already received two heart surgeries. Over the years, her journey has included numerous stays at Lurie Children’s, complex medical care, and several procedures. Most recently, she required a tracheostomy and ventilator support, adding another layer to her daily care.  

Yet, through every challenge, Mia continues to defy expectations. 

Teams across the hospital, including the Complex Care Team, Pediatric Intensive Care Unit (PICU), Neurology, and Palliative Care, have all played an essential role in Mia’s journey. Throughout the experience, the family found a home away from home down the street at Ronald McDonald House Chicago.  

“It is incredibly challenging to have a child with a diagnosis that requires so much support,” said Mia’s mom. “But Lurie Children’s has helped us build a team that is fully in Mia’s corner.”
That team was ready to support Mia through it all — whether successfully controlling her seizures after the family struggled to find answers elsewhere, placing a life-saving shunt that relieved severe pain, or helping her recover from serious viral illnesses and prepping the family to take care of Mia at home. 

Today, Mia is 6 years old, a milestone that once felt unimaginable. She loves going to sporting events, going on vacation with her family, and playing just like any other child. 

Her smile is contagious, and those who meet her quickly discover her gentle yet determined spirit.  

Turning Gratitude into Action 

Since Mia’s diagnosis with Trisomy 18 (Edwards Syndrome), the family has been inspired in ways they never could have imagined. What began as a fight for their daughter’s life has grown into a mission to give back, raise awareness and help other families walking a similar path.

“Children with complex medical needs depend on innovation, specialized care teams, and hospitals that are willing to push boundaries,” said Mia’s mom. “Fundraising helps make that possible.” 

Honored by the care they received, the family has turned with gratitude into action through fundraising and advocacy. Some of which include raising funds for the Lurie Children’s Trisomy Collaboration Team (a program designed to provide specialized, compassionate care for children with Trisomy 18), and becoming founders of the Edwards Syndrome Association.  

“Mia has not only changed our family’s life,” said Mia’s mom. “She has also helped change the way people with Trisomy 18 are viewed.” 

If you are interested in starting your own fundraiser, please visit our Community Fundraising page. To learn more about Edwards Syndrome, please visit the Edwards Syndrome Association.