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Bride raises Mito awareness

The groom and groomsmen wore BowTie Cause MitoAction bowties. The bridesmaids wore green. Every guest got a MitoAction bracelet. Even the wedding invite was green and included the Mito ribbon.

The bride, Devon Gottfurcht, has mitochondrial disease and she used her wedding to Dan DeSario as a vehicle to raise awareness about Mito. “There’s not a lot of awareness for mitochondrial disease,” she said.

In an ironic twist that Devon wasn’t aware of when they scheduled the wedding, the big day was Sept. 18, 2016, the first day of Mitochondrial Disease Awareness Week!

During the wedding ceremony, Devon’s nephew told the attendees why the men were wearing the ties and what they meant. Her best friend’s daughter read the definition of Mito.

“At the wedding, people got it,” Devon said. “It was discussed. People understood I went through a lot … that I was a survivor.

“We raised 100 people’s awareness about Mito!”

In 2015, Devon saw on TV and Facebook that Ken Rosenthal was wearing the MitoAction bowtie during the Major League Baseball playoffs and she called her father, John Gottfurcht, and told him. “He suggested we buy them for the wedding and Dan agreed. Then I contacted MitoAction!

“I then decided to make the accent color and bridesmaid dresses Mito green or a variation of green to bring awareness.”

After Rosenthal’s appearance during this year’s MLB playoffs in which he wore the MitoAction bowtie, Devon wrote to him:

Mr. Rosenthal, l just want to thank you for wearing the Mito bowtie. Although rare, I'm an adult living with mitochondrial disease diagnosed with CPEO in my eyes and there is no cure!  In 2015 you wore the Mito bowtie and we bought a bunch for our wedding to bring awareness to the disease! … It's people like you who inspire and keep me going! I thank you from the bottom of my heart for spreading awareness and compassion to our disease!

Rosenthal wrote Devon back: ... thanks for the note. I'm with you ... You inspire ME! … I really admire your courage. Can't imagine what it must be like to live like that. Thoughts are with you.

A love story

Devon and Dan got engaged several years ago. When Devon was diagnosed with Chronic Progressive External Ophthalmoplegia (CPEO), a mitochondrial disease that affects her eyes, she told Dan to leave, that he wouldn’t want to take this on.

“I hung up on him. I told him to find someone healthy,” Devon said.

But Dan didn’t listen. “He tells me I’m beautiful every day. He tells me I’m the same person on the inside.”

Devon and Dan, an attorney, met on Match.com. They fell in love over their mutual hatred of sushi and their love of music.

“Music is huge for us,” she said, noting the Rolling Stones is their favorite band. “We’ll stay home and listen to music, since I can’t watch TV.”

When they met, Dan had back issues that eventually required surgery. Devon was there for him and he’s there for her. “We are a team,” she said.

The journey

It’s been a tough road for Devon. The disease required her to have to wear sunglasses because of light sensitivity, even indoors, which caused people to think she was drunk or stoned. She’s heard comments like, “It’s rude to wear sunglasses indoors.” Or, “Look, it’s Lady Gaga.”

She had to stop working – her background is in sales and real estate -- and driving.

For Devon, there is also a heart component, loss of hearing, and weakness in her legs and feet. Yet she knows she is one of the lucky ones.

“I consider myself a Mito warrior and have been told I'm one of the lucky ones, because had I gotten Mito as a child, my life expectancy would be 10 years,” Devon said. “Since I'm fully grown, I should live a full life, just a different life.”

It's the love of her husband, family, and friends that gets her through.

Until the age of 41, Devon never had any symptoms. “I was super healthy,” she said but noted that if you look at pictures of her at age 35, you can see her eyes seemed lower.

“It hits you all at once,” she said. “It’s a lot. You become a prisoner to it.

“You feel very alone; it’s an invisible disease. People don’t understand … and I don’t want to explain it every day.”

Devon is not going blind, but her eyes get blurry, dry, tired, and droopy. Her doctors were able to give her her days but not her nights, making it difficult for her to go out after dark.

She stopped being invited out by some family and friends. She felt isolated when she was first diagnosed. Devon blames herself because she didn't want to be a burden to anyone.

It took a while for her friends and family to adjust to Devon’s new normal.

Devon’s amazing team of Los Angeles area doctors includes her cornea specialist, Dr. Nicole Fram (“I call her Dr. Hope as she was the first doctor to give me hope! I named my service dog Hope after her.”), and Dr. Guy Massry. But because Mito is rare, Devon has struggled to find a Mito specialist for her team.

Dr. Massry, a board-certified oculoplastic surgeon, performed two surgeries in July to lift her eyelids so she could see without having to use her forehead and or fingers to hold her eyelids open.

In the second surgery, the left eye had to be lowered because it couldn't handle the elements an hour after the first surgery. However, Devon’s corneas struggle so she goes to the doctor every few days. The surgery is reversible but Devon is fighting for that not to be her outcome. She is training to wear special lenses not covered by insurance.

She went from dress fittings to surgery to post-op to dress fitting to doctor appointments. She currently has appointments with Dr. Fram, Dr. Neda Shamie, and Dr. Robert Silver three times every week for bandage contacts.

But her wedding went off without a hitch. “If it wasn't for Dr. Massry, I would have had to walk down the aisle in sunglasses,” Devon said. “He opened my eyes and Dr. Fram and Dr. Shamie are helping me to see and keep my corneas healthy.”

Devon gives back whenever she can. “When you feel helpless, help others,” she said. Every year she holds a toy drive for Children’s Hospital in Los Angeles.

In the future, Devon wants to start a website as a place for people to find a doctor, find a friend, find hope. She has the domain name for www.everybodydeserveslove.com.

“You can’t give up hope,” she said. “I want to do something.”

For a PDF version of this story, click here.

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