Ridgefield Native runs Boston Marathon to Honor 20-Month-Old Patient with Rare Disease

Ridgefield Native Runs Boston Marathon to Honor 20-Month-Old Patient with Rare Disease

 

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In an inspiring show of resilience and compassion, Ridgefield native Emily Thompson ran the 2025 Boston Marathon to honor her 20-month-old patient, Ava, who is battling a rare and debilitating genetic disorder. Thompson, a pediatric nurse at a local hospital, dedicated her marathon run to raising awareness and funds for research into the condition, which currently has no cure.

Ava, who was diagnosed with a rare mitochondrial disorder, has faced a series of medical challenges since her birth. The disease, which affects the body’s ability to generate energy, has caused Ava to experience significant developmental delays, fatigue, and other severe health issues. Despite the overwhelming difficulties, Ava’s parents, along with Thompson, have remained hopeful and focused on improving her quality of life.

 

“Running the marathon is my way of showing Ava’s family, and others in our community, that we’re all in this together. I’ve seen firsthand the strength and courage that this little girl and her family have shown, and I wanted to do something that could raise awareness about her condition,” said Thompson, who has been involved in Ava’s care since her diagnosis.

Thompson’s journey to the marathon began after she learned about Ava’s condition and became deeply moved by the family’s determination to fight the disease. “I felt helpless as a nurse, watching Ava struggle through so many challenges. But then I realized there was something I could do: raise awareness through the marathon,” she explained.

In the months leading up to the race, Thompson trained rigorously, all while continuing to balance her demanding career as a pediatric nurse. Along the way, she organized fundraising events, including a community 5K run in Ridgefield, to support mitochondrial disease research. Her efforts were met with overwhelming support from her friends, family, and local community, who helped raise thousands of dollars for research into rare diseases.

The Boston Marathon, known for its history and prestige, provided Thompson with the perfect platform to draw attention to Ava’s fight. “It’s not just about crossing the finish line for me. It’s about raising awareness for those who are facing medical battles that few people understand,” Thompson said.

As she crossed the finish line in Boston, Thompson was overwhelmed with emotion. “I ran this marathon not just for me, but for Ava, her family, and all the children who are fighting rare diseases every day. This is just the beginning of what I hope will be a much larger effort to help find a cure.”

Thompson’s dedication to Ava and her cause has inspired many others in Ridgefield and beyond. Ava’s family, who were unable to attend the marathon due to Ava’s medical condition, expressed their heartfelt gratitude for Thompson’s gesture. “We are beyond grateful for Emily’s unwavering support. She has been our rock throughout this journey, and this marathon run is a testament to the love and care she gives to not just Ava, but all her patients,” said Ava’s mother, Sarah.

Thompson’s marathon run has sparked greater awareness about mitochondrial diseases, with many now looking for ways to support research and raise funds to help families like Ava’s. The pediatric nurse’s commitment to her young patient has become a symbol of hope and inspiration for those fighting rare and life-limiting diseases.