A beautiful teenage girl flips her long, chestnut, ringlet-curled ponytail as she lies her head back on fushia-colored pillows propped up on a hospital bed in her living room. Though young in years, her piercing blue eyes reveal an old soul. She begins to tell her story, with the hope of making even one more person aware, but soon dozes off. The five-hour daily Carnitine drip has begun.
Britttany Wilkinson, a freshman at Clovis East High School, has seen and lived through more than most adults in her 14 years of life. She lives every day with a life-threatening illness called mitochondrial disease.
Mitochondria are responsible for producing energy in almost every cell in our bodies. If the mitochodria are defective, the body will not function properly. More than one in 4,000 children in the U.S. will be diagnosed with mitochondrial disease by age 10 annually, and the mortality rate can be up to 50 percent each year.
Symptoms of the mitochondrial disease include, but are not limited to: loss of motor control, muscle weakness and pain, cardiac and liver disease, diabetes, breathing problems, seizures, visual/hearing problems, and developmental delays.
Though she has had medical problems her entire life due to the illness, Brittany was finally diagnosed at age seven with mitochondrial disease.
Because mitochondrial disease is genetic and passed solely through the maternal side, her mother, brother and sister had their DNA tested as well. A shock radiated through the family when they all tested positive. Brittany’s mother, Linda, had no idea she was a carrier.
The pieces of the puzzle meshed, and the family finally had a name to explain all the aches and pains they had felt for years. Among other indicators, they all get easily winded and have joint pain. Her sister, Ashley, recently started on a bi-weekly Carnitine drip. Brittany has a mutation in her DNA, which manifests itself in ways more complicated and severe.
Among other symptoms, Brittany stops breathing at night while sleeping, has a low heart rate, and her body, inside and out, is in constant pain. She has had three surgeries to remedy her ongoing reflux, none of which have corrected the problem. She does, however, have a large scar across her chest; a battle wound to show for the effort.
Brittany has both good days and bad. On a good day, a dull pain still resides, but she’s gotten so used to it over the years, it hardly seems like pain. A bad day is an entirely different story. “On a bad day, it feels like the muscles are being ripped from my bones,” she said. “The muscle pain makes it hard for me to move. Mitochondria disease is a very painful.”
Everything moves very slowly through her body, so her recovery time for anything from a cold, to surgery, is three times that of a well person. Brittany has spent over 150 days in the hospital throughout the past year and is now being tutored at home.
Because small tasks require an extra bit of effort in the Wilkinson household, Brittany has enlisted the help of Freedom, her service dog for the past two years. The yellow lab doubles as Brittany’s hands and feet, turning on light switches, bringing her the remote, but most importantly, provides a constant source of companionship. Freedom is her best friend.
In order to conserve what little energy she has, Brittany uses a wheelchair and cannot lift her hands up for long periods of time. Ashley helps her get ready for the day. “It’s hard having to depend on people,” said Brittany. “I feel bad having to ask my sister to do my hair and makeup,” she said.
“I guess Freedom will have to learn to do your makeup,” jokes her mom.
Jeff Dailey, leadership teacher and golf coach at Clovis East High School, has been an uplifting donor of hope to Brittany and her family. Knowing that her playing time would be limited, Dailey still insisted that Brittany have a spot on the golf team. He explained that she was welcome to come out and play anytime she was up to it.
“She wanted to be out there so bad; her desire to do well was contagious to her teammates,” Dailey said. “My students are amazed to see her in the team golf photo on my wall because Brittany suffers from mitochondrial disease. I tell them that if she is ever given a full season she would play in a few varsity matches.”
Brittany has aspirations of becoming an actress and recently traveled to Los Angeles to have professional head-shots taken. She would love to find an agent who specializes in hiring disabled actors.
But somehow the word “disabled” doesn’t seem to fit Brittany. Aside from the wheelchair and service dog, Brittany looks like a typical teenager. One would never guess by looking at her picture that the spunky, smiling teen with long, curly locks spends so much of her day confined and in pain.
Nadia Rodriguez, a good friend of the family, agrees. She said that she had no idea how sick Brittany is because she looks so good. “She’s not down about her illness,” she said.
It wasn’t until Nadia was around the family and saw the constant care that Brittany requires to help satiate the discomfort that she realized what a toll that mitochondrial disease has taken. “We go through little pains and think it’s the end of the world,” she said. “She has such strength and such drive even through the extent of her pain and therapy.”
Despite the daily struggles, a light shines brightly within the Wilkinson household. They live their life through faith, which helps carry the family day by day. Linda has been a constant source of inspiration for the family, and most importantly, for Brittany.
“I couldn’t do this alone. I couldn’t,” said Linda. “The Lord gets us through each day.”
Last November, after spending two months in the hospital and suffering a week with an ongoing migraine headache, Brittany was ready to give up hope.
“My disease was progressing and I didn’t know if I would make it,” she said. “I didn’t want to go on anymore.”
“You don’t have a choice in the matter. It’s not your call,” Linda told her daughter. “Let’s take every day for good and make a difference. Let’s find help.”
They prayed together. Brittany had an epiphany, realizing her purpose in life. She decided to take the focus off of the disease and put the energy she musters daily into fund-raising and finding a cure. “I want to try to help find research for mitochondrial disease,” she said.
Within months, two events were on the horizon, orchestrated almost entirely by the weak, but determined teenager. From her hospital bed and by wheelchair, Brittany solicited businesses for donations, set up times, dates and locations, and secured speakers and patrons for the golf tournament and dinner/dance, each held earlier this year.
“This year’s events are mainly to raise awareness,” said Linda. “Now that we know what we’re doing, next year we’ll focus more on donations for the mitochondrial disease research fund.”
Between the two recent fund-raisers, Brittany has raised over $5,000 for the United Mitochondrial Disease Foundation (U.M.D.F.).
“For Brittany to have the kind of involvement she has with her foundation shows the determination she has to fight this disease,” Dailey said. “She has done more with her life than a lot of people her age.”
Now she is on the hunt with another event to bring in more donations and raise even more awareness.
Brittany approached friends, asking for donations. Nadia told her she’d do even better. She offered to put together a soccer tournament with all of the proceeds going to the U.M.D.F. “Seeing all of the energy the family has in trying to find a cure and seeing Brittany being so positive at such a young age is such an inspiration,” said Rodriguez.
She felt the least she could do was to organize the tournament. “Everyone in the (soccer) community is coming together to help out,” she said.