Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

The Quinn’s Atlanta Snowstorm Surprise

SnowJam2014

Atlanta’s “Snow Jam”

The Quinn’s story began with taking 17-year-old Lauren to Atlanta to see her specialist. Dr. Shoffner diagnosed Lauren Quinn with having mitochondrial disease five years ago.

This past week, Lauren and her mother packed their bags and flew from Florida to Atlanta. Little did they know, they were in for more than just a doctor’s appointment.

Lauren had a 1 p.m. appointment with Dr. Shoffner on Tuesday, January 26. After the appointment, Lauren and her mother, Barb, left with the intent to return their rental car prior to their flight back to Florida.

Once they left Dr. Shoffner’s office and pulled onto the highway, everything became so real. Dr. Shoffner had informed them of the weather, but nobody had any idea that it was moving so fast.

Traffic was gridlocked. The Quinn’s rental car’s engine stopped twice, occasionally swerving as a result of the black ice. They kept turning the car off to preserve gasoline.

Snow Angel

Lauren’s snow angel on the side of the road.

A few hours later, Lauren’s silly side came out and she had an urge to make a snow angel on the side of the highway. After all, they were not going anywhere! Lauren and Barb made the most of it, chatting about Lauren’s upcoming Winter Formal. They both knew they didn’t have much choice, so it was easy to make the best of it, since so many people around them had it much worse. There were accidents, abandoned cars, and even a mother giving birth on the side of the road. Barb then thought of all the people that lived through Hurricane Andrew in Miami and September 11, which reminded them that they didn’t have anything to complain about!

After countless hours of sitting in gridlocked traffic, Barb was finally able to inch her way off an exit. Their goal was safety and food. They tried to get gas, but each station had a long line of cars. Barb then spotted a glowing “OPEN” sign. In hopes of getting dinner, they pulled in only to find out it was a bar. But a bar with food sounded great. So 17-year-old Lauren went to her first bar at 1:30 a.m. with her mother.

Shelter

Lauren seeking shelter.

After dinner (or a very early breakfast), Lauren and Barb sought safety at an Atlanta shelter. It was life changing. They were immediately overcome with emotions the moment they stepped foot in the shelter. What a dose of reality.

The Quinn’s slept in a well-lit, large, gymnasium on mats. Their flight had already been cancelled three times and they were eager to go ahead and get to the airport, so Lauren and Barb didn’t sleep much that night.

The roads were still a disaster when they left for the airport. Since their rental car was unpredictable, “conservative Barb” decided to take her chances and ask a fireman to take them to a MARTA station a mile and a half away. MARTA’s website only provided transportation information for a typical day, which this was not! So, Lauren and Barb took off in a large SUV, which gave them a pleasant feeling of safety under the inclement conditions.

Lauren Quinn

Lauren braving the snow.

Lauren and her mother stood outside in the 18-degree weather in their warmest Florida attire, hoping to catch the first (but delayed) MARTA train to the airport. Once MARTA arrived, they managed to make it two stops, but then they were required to get off and wait outside again for the next train, which was to arrive 90 minutes later. Yes, these Florida girls stood outside and nearly froze for an hour and a half.

But, luckily the train arrived earlier than expected and Hartsfield-Jackson International Airport never looked so good! After four flight delays, they were finally in the air, heading back to Jacksonville. Lauren and Barb have always loved their beds, but “love” took on a whole new meaning.

The Quinn girls are so thankful for the Red Cross. They were so wonderful at the shelter, displaying patience, kindness, concern and constant assistance. Everyone worked hard and the Quinn family has the greatest amount of respect for all that they do – and it was done with such grace and willingness.

Lauren and Barb Quinn are both involved in this year’s Hope Flies for Friends event taking place on Thursday, February 20th at Table 1 in Ponte Vedra Beach.  Click here to learn more about the event, mitochondrial disease and help us fund the cures.

Three Jacksonville Families Partner with the Foundation for Mitochondrial Medicine – Hope Flies for Friends

Three Jacksonville families are partnering to host a benefit for the  Foundation for Mitochondrial Medicine and the Hope Flies for Friends fundraising event. Hope Flies for Friends is inspired by three Jacksonville youth that have mitochondrial disease — Lauren Quinn, Stacy Young and Caroline Sacco – honorary chairs of the event.. The event is scheduled for Thursday, February 20, 2014 at 5:30 pm at Table 1 in Ponte Vedra Beach and will feature wine tastings paired with items from the Table 1 menu. Organizers hope the event will raise $13,000 for the Foundation.

Mitochondrial disease is an energy production problem that primarily affects the muscular and neurological systems. Mitochondrial are the “power plants” that produce the body’s essential energy and when they don’t function properly, the body can have a “power failure.” There is a graduation of affects – ranging anywhere from a “brown out” to a fatal “black out” – and no two people diagnosed with mitochondrial disease have the exact same symptoms. Mitochondrial dysfunction is at the crux of many common diseases including Autism, Alzheimer’s, Parkinson’s, ALS, and chronic fatigue, and research and treatments for mitochondrial disease could help in treatments for these other diseases. Mitochondrial disease affects 1 in 2,500 and currently there are no treatments available.

Lauren Quinn, a high school junior, was diagnosed in 2011. Although Lauren has had a lifelong passion for sports, her mitochondrial disease means she no longer has the energy to play sports. Completing a full week of school, along with the rigors of being a junior in high school and minimal social activities, often times leave Lauren extremely fatigued with muscle weakness and the inability to concentrate. She usually spends her weekends resting and giving her mitochondria time to recover for the next week. More recently, she has developed significant memory issues that has created additional challenges.

Stacy Young is a freshman at University of Central Florida, majoring in biomedical sciences with the goal of becoming a pediatrician. Stacy became ill at age 11 and received an incorrect diagnosis of mononucleosis. After struggling to find an answer to her medical issues, she was finally diagnosed with mitochondrial disease at age 15.  Her symptoms continue to progress and change frequently, sometimes on a daily basis.  The unpredictability of her symptoms is extremely challenging to cope with and she struggles with fatigue, GI issues, chronic pain, muscle weakness, neuropathy, memory issues and more. Often, she is unable to perform daily tasks such as eating, attending school, driving, or walking.  Stacy enjoys dancing, cooking and spending time with her friends and family.

Caroline Sacco is nine years old and has experienced health issues from birth. She was born in respiratory arrest and she failed to meet early developmental milestones. By the age of three months, Caroline was undergoing intensive early interaction therapy. Throughout her early childhood, multiple doctors were not able to determine the cause of her health issues and she was not diagnosed with mitochondrial disease until age 6. Her mitochondrial disease affects many of her body’s systems including her respiratory, muscular, bone, digestion and immune systems among others. She is a happy child and loves her school and classmates.

“The families hosting Hope Flies for Friends have a true passion to educate others about mitochondrial disease and the importance of finding a cure. Their efforts translate into significant funds raised,” said Laura Stanley, executive director for the Foundation for Mitochondrial Medicine. “Hope Flies for Friends is a fun way to get involved, support local Jacksonville families and help fund a cure for mitochondrial disease.”

Tickets to the Hope Flies for Friends are $25 per person and sponsorships are available. Event Chairs are Lisha Wise and Phyllis Bove and the event committee includes Barbara Quinn, Carol Young, and Amanda Sacco. For more information about Hope Flies for Friends, visit www.hopeflies.org/friends or visit the Facebook page at www.facebook.com/hopefliesforfriends

 

 

 

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