Jo-An Gardner is training for the Boston Marathon but she’s not doing it alone. The memory of her baby boy is with her every step of the way.  

“I cry all the time when I’m running,” said Jo-An, who had always been just a casual runner. “It’s the best time to have quiet time with him. I sing to him; we have a lot of talks. And I’m accomplishing something.”

Jo-An is running the marathon in memory of her son, Declan, who died from symptoms of mitochondrial disease four days after his birth on Aug. 30, 2011. She is part of the Boston Children’s Hospital, Miles for Miracles Team.

“I want his life to mean something,” said Jo-An, who lives in Stoneham, MA. “I always want to remember him and do good by him.”

Jo-An’s marathon training honors the short life of her beautiful boy and raises awareness about mitochondrial disease. “I love talking about Declan. Any way I can get the word out, I’ll do everything I can,” she said. “I want to make his mark on the world memorable.”

Mitochondrial disease is a chronic illness that causes debilitating physical, developmental, and mental disabilities. You can be born with it or it can develop later in life. It’s progressive and there is no cure. About 1 in 2,000 people has Mito. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, and Parkinson’s. 

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Jo-An had a perfect pregnancy. Jo-An’s mother passed away in 2010 and she believes that Declan was a gift from her mother.  

There was no indication of any problems with the baby until he was born. “The first couple days we didn’t know what was going on,” she said. “We didn’t know how scared we were supposed to be.”

Jo-An never left Declan’s side the whole time. “I just couldn’t.”

Declan underwent so many tests. Finally, he received an MRI. “They told us he had symptoms of mitochondrial disease. We had no idea what that was.”

Jo-An and her husband, Al, were told that the mitochondria cells in Declan’s brain were not producing  enough energy for him to survive. They were told to call their families to come and see him because he didn’t have much time. They were also asked if they wanted Declan baptized. They did.

Both sides of the family came to see Declan. “It was nice for him to hear laughter, to hear the people who love him. He had to see his family; he had to hear these voices.

“It was actually a beautiful day,” she said.

Declan’s step-siblings, Tyler and Sadie, got to spend quality time with him.  “They met him and held him,” Jo-An said. “The kids cherish that. We always talk about Declan.”

With the 2011 MitoAction Energy Walk & 5K Run for Mitochondrial Disease just two weeks after losing their precious boy, the family came together as Team DECLAN. Despite being devastated and overwhelmed, Jo-An made sure that Declan was honored, remembered, and loved. This is her mission.

“It was amazing to have family and friends come together and join us as we walked in honor of baby Declan,” Jo-An said. “The love and support for us was just amazing.”

Jo-An and Al  knew that meeting other families just like them would help their family cope in some way.  “We had the chance to speak to some amazing people and take comfort in the fact that we were not alone,” Jo-An said.

“We miss our baby Declan every day ... we also recognize that our baby Declan means so much to so many people.  So, for us the MitoAction Energy Walk & 5K Run for Mitochondrial Disease is even more important.  It is our chance to come together with all of our family and friends in celebration of our son Declan’s life.”

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Jo-An and Al are still searching for answers. They are participating in genetic studies at Children’s Hospital. “We needed to do something,” she said. “We were so overwhelmed by sadness over losing our son.” 

Jo-An and Al didn’t allow invasive testing while Declan was alive. “Testing wasn’t going to save him. We let him be,” Jo-An said. Now, Children’s Hospital is doing testing to pinpoint the type of Mito Declan had. The hospital will test all 30,000 genes in Jo-An and Al (there are no signs of mitochondrial disease in Jo-An’s family history), and there is DNA left from Declan to test as well.

The Gardners feel lucky to be part of the Children’s Hospital study. “I will do everything, take every test … I just want to get to the bottom of it, “Jo-An said. “This is the last hope of knowing exactly what happened.”

Participating in the Boston Marathon on the Miles for Miracles team allows Jo-An to stay occupied while the study is under way. It’s helping her keep a clear head, to stay healthy, to help other kids, to give back to Children’s Hospital. “And it’s another way to honor Declan.” 

During the week, Jo-An runs on her own … with Declan always by her side. It’s not easy. “Running by a park took my breath away because I should be at that park with my baby.”

On Saturdays, the Miles for Miracle team meets at St. Paul’s Church in Wellesley to run together. “I love feeling like a part of a team. Everyone is doing it for such a great reason.” 

The team teaches its runners about nutrition, the science of running, training schedules, and more. Prior to training for the marathon, Jo-An had run for exercise and to keep her weight in check. But she has always wanted to run a marathon.

After each Saturday run, Jo-An stops into the church to say a prayer to Declan and her parents. “That’s an important part of my day.”

The first day of training, Jo-An thought, “‘How am I going to do this?’ Then I thought, ‘I’m going to do it. Determination over fear.’ I’m determined to do it for my baby. I don’t have fear anymore that I can’t do it. I have the knowledge of how it’s supposed to be. I won’t let my son down.”

To donate to Jo-An, go to: http://www.milesformiracles.org/boston/jo-angardner

To learn more about mitochondrial disease and MitoAction, please visit www.mitoaction.org, email info@mitoaction.org, or call 888-648-6228.

MitoAction, a Boston-based 501(c)(3) charity incorporated in 2005, is a dedicated support and empowerment organization for patients and caregivers affected by mitochondrial disease.