After Jessica Gemayel lost her battle with mitochondrial disease a few months ago, her friends gathered to figure out what they could do in her memory.
Courtney Brown, Jessica’s best friend since middle school, and the rest of their gang decided to form Team Jess for the MitoAction Energy Walk & 5K presented by Stealth BioTherapeutics on Sunday, Sept. 18.
“We’re commemorating her memory and raising awareness of the disease,” said Courtney, the captain of Team Jess, which also includes Amy O’Brien, Samantha Eakins, Ashley Lunetta, and Michelle Gillis.
“I think she’d be happy and proud that we are doing something to commemorate her and raise awareness. That meant a lot to her.”
Jess’ sister, Georgina Gemayel, agreed: “I believe that Jess would be so grateful that her friends went out of their way to support the struggles she has been through in her life. She would be amazed at all the people going out of their way to be there in honor of her and make a topic so important more known to the world and to the people that she knew and loved.”
In January, Jess, who was living in Quincy, MA, was admitted to Children’s Hospital suffering from what doctors thought was the progression of the rare disease she was born with: Mitochondrial Myopathy Lactic Acidosis & Sideroblastic Anemia. During her extended stay at the hospital, doctors also diagnosed Jess with a blood disease called HLH, noting they believed she was the only person in the world with Mito and HLH together. She began chemotherapy right away. But on March 18, at the age of 28, Jess lost her battle.
Courtney and Jess met in middle school in Carver, MA. Courtney remembers it like it was yesterday. “In gym class, we had to do a mile run. I saw Jess was having a hard time finishing, so I stopped to see if she was OK. She was so thankful for the help.”
It was an instant – and lifelong – connection. “She’s one of the most amazing friends I’ve ever had,” Courtney said.
She was an equally amazing sister.
“As her baby sister, she felt she had a duty to care for and protect me. She always had my back and watched over me,” Georgina said. “She literally taught me everything I know and when it was my time to teach her something, she listened with an open heart and worked so hard to grow and be the best person she could be. She helped me get through life thus far, even though life was hard enough for her. She would always put all her problems aside to guide me and show me the best possible way to do something, even if that something was too difficult for her to do herself.”
Despite dealing with Mito every day – and the fatigue that came with it – “Jess was such a little spitfire,” Courtney said. “She was always trying to overcome it.”
And she did.
“She pushed herself to the limit,” Georgina said. “Doctors told her not go to college, so she got two degrees [accounting and finance]. Doctors told her not to work, so she worked full time. She was the biggest fighter and she had a light that shined so bright I can still see it every day.”
Jess was always an A student and never felt that having Mito was enough to stop her from following her dreams despite was the doctors told her. “She had too much love in her heart and fight in her body and soul to give up easily,” Georgina said. “The doctors were surprised that she could maintain enough energy to do the things she loved, travel to the places she went to, and work as hard as she did. They were surprised she could even walk as much, talk as much, and have such an overwhelming beautiful personality despite what her DNA proved.”
Jess had few to no symptoms at all when she was younger. Georgina said Jess first really felt her disorder when she was forced to run during gym class in grade school. She was unable to walk the distance fast, never mind run. Jess complained to their mother, Samia, who took her to the doctor. The doctor initially assumed she had asthma.
Jess was often fatigued and struggled to maintain energy. She needed a wheelchair for trips to amusement parks or the mall. Her body was sensitive to extreme temperatures.
Jess was first brought to Children’s Hospital in Boston about 20 years ago, when not much was known about Mito, Georgina said. When the doctors tried to figure out her diagnosis, they assumed she had a heart disease because of her irregular heart rhythms. She even underwent a seven-hour heart surgery in hopes that she would get better, but unfortunately, it didn’t help. There was one doctor at the hospital, a Mito expert, who believed Jess had a form of Mito. But it wasn’t until Jess was 27 years old that her doctor was able to perform the proper testing on her to prove definitively that she had MLASA, Georgina said.
The last year of her life, her Mito symptoms were much stronger. She could not use her arms as well and chewing and swallowing were difficult. And keeping her mind where she wanted it to be became difficult.
“She will always be remembered as that beautiful person we all knew and her voice will remain in our hearts forever,” Georgina said. “Her aura was so strong and bright that all I have to do is think about her and I can feel her energy. She has a soul like no other and I know that she is now doing the things she never imagined she could do. I am so proud to call her my sister and to have known her better than anyone.
“Her strength now remains inside me, pushing me to fulfill things I never thought I could do. Her love remains in the hearts of all my family members and she inspired all of us to set our limits higher, to lover harder, and smile brighter because we will only live now and life is short, so no matter what the obstacles are we will never give up because Jess taught us not to.”
Jess’ family is so grateful for the formation of Team Jess. “It is so incredibly important to raise awareness about Mito because of how many lives are affected by it and still how little people even know what it is,” Georgina said. “Awareness is the sole thing that can help more people understand and eventually maybe there would be a cure for those suffering.”
Team Jess is excited about participating in their first walk. “We look forward to come together as a team and celebrate Jess’ memory,” Courtney said.
“Jessica is the definition of true strength and resilience. She fought so incredibly hard every single day of her life to overcome the daily battles and struggles that living with mitochondrial disease can cause,” Courtney says on the Team Jess Facebook page. “In doing this event, it is our mission to channel all of Jessica’s inner strength into our cause and to raise money for those still suffering from the debilitating effects of this heartbreaking disease.”
The funds Team Jess raises will go toward the programs MitoAction brings to the Mito community on a daily basis, including patient advocacy, new patient kits, Mito 411, the clinicians guide, monthly teleconferences, and many more.
To register for the walk, visit www.mitoaction.org/energywalk.
The Music Moves Her
Jess Gemayel and her sister Georgina shared a mutual love of music, especially reggae, which moves and empowers the soul.
“We would go to concerts together and learn every word of the songs before the concerts to be well prepared for the show,” Georgina said.
Because of her mitochondrial disease, Georgina would call ahead to venues and arrange to have seats so that Jess could sit down.
“We had a deep love for this reggae artist named Chronixx, who sings a song called ‘Iyah Walk.’ Jess felt deeply connected to this song because the lyrics go as follows:
“Iyah walk, walk and mi nah get tired. Yes Iyah walk, walk and mi nah get weary, cause I am on a journey and I’m a conquering lion.”
Chronixx’ music is filled with inspiration and love from the Most High, Georgina said. “When we attended his concert in July of 2014, Jess was so moved by his music she didn’t sit down once for the whole four-hour show. This was remarkable to us; we could not believe that she didn’t feel tired and need to sit down. We then knew that the music in our hearts that pushed us to be stronger was reggae music.”