Editor’s note: Jagger passed away from mitochondrial disease on April 20, 2024, with his family by his side. We turned to UMDF Associate Director of Support & Education Margaret Moore, one of the first people to meet Jagger and his family more than 12 years ago, to help put into words all that he meant to UMDF and the mitochondrial disease community.

Said Margaret: “Some people, you know from day one that they’re going to play a huge role in your life. And for me, that was Jagger and his family. They were one of the first families I met when I joined the UMDF team. I knew they were going to move mountains – and they did. Jagger was truly a rockstar.  Very few people have done more to help the world understand what it is like living with mitochondrial disease.  His blog, and later his Facebook page, gave an uncensored look at his highs and lows, and in the process, inspired thousands of followers to laugh, love, cry, and ultimately, take action. The tireless advocacy and fundraising work of Jagger’s parents, Sebastien and Annett, have made an indelible mark on the mito community that will live on for generations to come. All because of this beautiful boy. He will be missed, but never forgotten.”

“When I went to my first symposium, it was a really big deal, because I realized we were not alone.”

For Sebastien and Annett Cotte, no two days are the same when it comes to caring for their son, Jagger.

A typical routine for the Stone Mountain, GA, couple begins when Jagger wakes up between 10:00am and noon. From there, the couple must spring into action to ensure that Jagger’s needs are taken care of.

“He starts coughing right away so he has to be suctioned, and then we have to give him a breathing treatment,” Sebastien said. The treatment can take between 30 and 40 minutes. While he or Annett assists Jagger with the breathing treatment, the other prepares the more than 30 doses of medication Jagger takes each day. Each dose will need to be given through his feeding tube every hour.

“If he’s calm, we let him be until mid-afternoon,” Sebastien added. “Sometimes we try to do things with him. Sometimes he will fall asleep. In between, there are more breathing treatments, sponge baths and lots of coughing. We also have other things to do, like work and laundry.” They care for Jagger without a nurse or any outside help.

“I always tell people I am lucky enough to have a husband who cooks, because I eat well,” Annett jokes.

If everything goes well with what the couple calls “Jagger’s continuum of care,” the family may settle into bed at 3:00am. More often than not, bedtime is closer to 5:00am.

 In 2011, with little understanding about what was wrong with their son, Sebastien and Annett had doctors perform a muscle biopsy on Jagger after several hospital visits where Jagger’s muscles were stiffening, and he was writhing in pain. During one visit, Jagger was revived after he coded – an incident that has repeated several times since the first visit.

The biopsy results showed Jagger had a mitochondrial disease. A follow-up MRI revealed a bisymmetrical lesion on his brain. Between the MRI, blood tests and the muscle biopsy, the Cottes received a clinical diagnosis for Jagger: Leigh syndrome. They were told that Jagger would not live to see his fourth birthday. Jagger is now nine years old.

The Cottes left the hospital with a priority of rearranging their lives to make sure Jagger would have a wonderful quality of life and to keep his suffering at a minimum.

As any parent who cares for a child with mitochondrial disease knows, personal sacrifices are many and often go unnoticed. While honoring their promise to provide Jagger with quality of life, they still have full time jobs and other responsibilities. Sebastien has worked in sales for a Japanese based company for 15 years. His main office is in Chicago, but Sebastien works from the family home outside of Atlanta. His employer allows him flexibility in his schedule.

“As long as I have an airport near, and I have a computer, I can work from anywhere,” he said.

Since his company’s headquarters is based in Tokyo, Sebastien has the opportunity to do most of his work while Jagger is sleeping as most of his colleagues are in the office during that time. He also credits his supervisors for offering him flexibility and understanding.

For the past 14 years, Annett has worked for the Centers for Disease Control (CDC) in Atlanta. Her schedule allows her to work from home three to four days a week.

“I work on Malaria control in sub-Sahara and Africa. I do work late at night, which is beneficial because my colleagues are usually up when I email or call them so we can communicate in real-time,” she said.

For both, juggling their careers and travel schedules can be tricky. They use a shared calendar to track meetings, travel, and Jagger’s medical appointments. Coordination is critical.

For example, Jagger has an IV port that requires cleaning and sterilization every seven days. It’s a job that requires two people.

“Sebastien is my assistant on this, so I try not to be gone more than eight days in a row,” Annett explained. “Besides, I miss cuddling with Jagger, so eight days to be away is plenty.”

Because of the difficulty in transporting Jagger, the Georgia heat in the summer and complications that could arise, the Cotte family is usually homebound when they are not working or traveling for business.

“Before Jagger was born, we were very active and traveled a lot,” Annett remembers. Taking care of Jagger was an adjustment for the couple, who say they were definitely not couch potatoes. “You kind of go stir crazy a little bit after being stuck in the house for several days missing the sunlight,” she added.

To maintain their own mental health, the couple concluded they needed to get out and do things, even if they have to do them individually to maintain Jagger’s care at home. Annett likes to kayak and paddleboard, and Sebastien, who she credits with being more outgoing, likes to go to concerts. They also find support and comfort talking with parents whose children are also affected by mitochondrial disease.

While the Cottes point out that they are realistic about Jagger’s future, it doesn’t stop them from working to help other patients and families who are on a journey with mitochondrial disease. Sebastien is a longtime advocate for the use of medical cannabis an option for patients. He continues to educate lawmakers and patients about medical cannabis therapy and how it enabled them to eliminate the opioids they gave Jagger for pain.

In March of 2019, Annett served as a panelist for the Patient Focused Drug Development Meeting with the U.S. Food & Drug Administration (FDA). The meeting was hosted by the UMDF in partnership with Mito Action and the Muscular Dystrophy Association. The patient-led meeting provided affected adults, parents and caregivers a platform to detail their own personal experiences with mitochondrial disease. The testimony was published in a “Voice of the Patient” report outlining the need for therapeutic development towards treatments and cures.

“It was very emotional,” Annett said about her experience. “I felt as if the other panelists were being Jagger’s voice, because he is non-verbal. They put a voice to his pain and discomfort. And yet, it was comforting for me to hear the panelists speak because, as devastating as our stories are, I was able to relate after hearing patients talking about their experiences.”

The Cottes track their involvement with UMDF back to shortly after Jagger was born. They remember being new parents who knew nothing about mitochondrial disease. They aren’t sure if they found UMDF in an online search or if it was through the recommendation of another parent, but they do remember the desperation they felt.

Sebastien and Annett were invited to an Atlanta patient family meeting by UMDF’s Education Support Associate, Margaret Moore. It was there Sebastien met other patient families and learned about Mitochondrial Medicine, UMDF’s one of a kind annual symposium that brings together patients, scientists and clinicians.

“When I went to my first symposium, it was a really big deal, because I realized we were not alone,” Sebastien remembers. “I also realized there were a lot of people who were caring about our kid and really wanted to help. They are dedicating their lives to finding a cure and making our kid’s life better, and that was a huge boost of hope.”