COLUMBUS, Ohio -- A night of celebration for Alan Faneca and his family took a horrifying turn on a ribbon of Louisiana asphalt eight years ago.
The former Steelers’ left guard and his wife, Julie, had spent a memorable day with their daughter, Anabelle, to mark a medical milestone. Their little girl, who suffers from a rare neurological disorder, had gone an entire year since her last seizure.
The mood at the restaurant was buoyant, the occasion ideal for raising glasses to progress and a healthy future. Anabelle was 8 years old and ready to begin third grade the next morning.
She never made it to class.
The family's oldest child had a prolonged seizure on the ride home with her parents. Julie crawled into the back seat of the vehicle to administer CPR, while Faneca floored the accelerator, knowing how vital time was to the safety of their daughter.
“That ride, for me, would best be described as terrifying chaos,” Faneca said. “I was trying to stay under control, not calm — that was out the window — but I knew I needed to keep it together to get us to the hospital as fast as possible and in one piece. We were on the highway, so there was really no pulling off, and the fastest way to get help was to drive to the hospital.”
Anabelle survived the "stroke-like episode" even as eight grueling months of physical, occupational and speech therapy lay ahead. The left side of her body had been paralyzed for the third time in her young life.
What had an innocent child, who loves crafts and woodworking, done to deserve such a fate? Sitting in a New Orleans hospital, Julie watched over her daughter and thought there had to be a better way to combat Sturge-Weber syndrome, a condition affecting the eyes, brain and skin.
“It is a terrible feeling to see your child like that,” she said. “We knew we had to get her to a place where she could receive the best possible care, and where they’re doing research to help kids living with this.”
In four months, the family will travel to Canton, Ohio to watch Faneca’s enshrinement into the Pro Football Hall of Fame. Speeches will be made. Tributes to a six-time All-Pro and Super Bowl champion will flow from former teammates and coaches.
Gridiron achievements aside, there's another community of admirers — some who never saw Faneca throw a block — that will say what Alan and Julie have done in the fight against their daughter's disease since that awful night in the late summer of 2013 is just as worthy of recognition.
EAGER TO HELP
On the office wall of Dr. Anne Comi hangs a child’s painting. It is a vase of flowers, and it was presented to her by a longtime patient.
Dr. Comi is the director of the Hunter Nelson Sturge-Weber Center at the Kennedy-Krieger Institute in Baltimore. Families from all over the nation visit the facility in search of relief from a disorder that affects one in every 20,000 to 50,000 people, according to its website.
“Anabelle gave me a piece of her art,” Dr. Comi said. “And, I wanted to find a place to put it up.”
The painting has sentimental value. The gifts the Fanecas have given the institute, all in the name of medical research, are incalculable.
Like many parents of children battling diseases and disorders, Alan and Julie have been to countless doctors looking for answers. Their trust in Dr. Comi is such that they moved from New Orleans to the Washington D.C. metropolitan area seven years ago to live closer to the the Kennedy-Krieger Institute and The Johns Hopkins Hospital.
“We are dedicated to her work and she’s pretty remarkable,” Julie said. “She was part of a team of doctors who helped find the genetic mutation that causes the disease. Dr. Comi is brilliant.”
Sturge-Weber is not hereditary, even though Faneca, 44, has dealt with epileptic seizures since age 15. The couple’s two other children, Burton, 10, and Pennie, 6, are both healthy.
Anabelle was born with a port-wine birthmark above her right eye, a telltale sign of Sturge-Weber— an abnormality of the blood vessels in the brain, skin and eyes. Those afflicted are at high risk to glaucoma, vision loss, atypical blood flow to the brain, seizures and strokes. Neurological, developmental and cognitive problems can arise. Specific symptoms and severity of the disorder can vary dramatically from one person to another.
Her first two prolonged seizures, which also paralyzed Anabelle, came between the ages of 1 and 3. Faneca’s history with epilepsy alerted Julie to the first episode while the family was on a fishing trip in Louisiana.
“I would not have known what to do otherwise,” Julie said. “It was a blessing in disguise.”
Despite the health scares, the Fanecas consider themselves fortunate. Many kids have more aggressive forms of Sturge-Weber and some lack the financial backing to choose who treats them and where they will receive care. The Fanecas know families with children who suffer 10 to 20 seizures a day and require such a high volume of medication that it can arrest development and affect behavior.
“If they end up on three, four, five anti-seizure medicines, it can really decrease quality of life,” Comi said. “Kids can become less attentive, sleepy, develop mood issues.”
The Fanecas wanted to find ways to help others families in similar situations. Since meeting at LSU in their freshman year, their lives have been open books.
Julie suffered postpartum depression following the births of all three children, and last year she shared her story to raise awareness of the condition. Faneca has lent support to the Glimmer of Hope Foundation, a non-profit that assists families with children fighting cancer. He’s also been a tireless advocate to de-stigmatize epilepsy, drawing on his own experiences.
“I’ve always wanted to talk about it and keep it in the open,” said Faneca, who still takes six pills a day. “The more you talk about it, the less it becomes a stigma to the rest of the world. People only know what Hollywood shows them and it’s not all scary. People that have it can still do big things with their lives.”
Faneca, who retired from the NFL after the 2010 season, earned more than $75 million during his career, and he’s rarely balked at donating to good causes. How the family ended up funding clinical trials and research for an unconventional treatment to Sturge-Weber started with a Facebook message from one of Julie’s grade-school friends.
It contained a link to a CNN video about a young girl, Charlotte Figi, who was finding relief from a catastrophic type of epilepsy through oil extracts from medical marijuana. It was a controversial treatment that initially had little support from the medical community.
Her parents had met with a group of brothers in Colorado who were breeding an unusual strain of cannabis that later became classified as hemp because of its high-cannabidiol, low-THC content. Although Charlotte died at age 13 a year ago, her story helped inspire the cannabidiol (CBD) movement.
“I started watching this video and I was like, ‘What does (my friend) want me to do, smoke marijuana and blow it in my daughter’s face?’ ” Julie recalled thinking. “By the time I got done watching the show, I was like, ‘We need a marijuana study on these children.’ ”
Dr. Comi was intrigued, but she knew years of research and medical trials would be necessary before there was any chance a CBD product could become FDA-approved or clinically prescribed for Sturge-Weber patients.
Such undertakings are expensive and National Institutes of Health prefer funding biomedical studies into more common disorders that affect wider swaths of the population. That’s where the Fanecas and other affluent families entered the picture.
Never mind Anabelle had found medication that was working for her by 2015 and didn’t need CBD to combat seizures. Her parents just wanted to know where to write the check.
“Alan and Julie have been very generous,” Dr. Comi said. “The family wasn’t thinking of itself, but thinking how else it could improve our knowledge of the disorder that benefits other children and patients and, perhaps, benefits Anabelle for the future.”
FANECA FAMILY
The Faneca family in front of their Virginia Beach, Va. home.
THE LONG RUN
They met for the first time at a Sturge-Weber convention in 2019. Within a few hours, Julie and Krissta Ross felt like they had known each other for years.
That's not uncommon among parents of children with rare diseases and disorders. So many shared experiences. So many stories involving fear, anxiety, hope and dreams.
Krissta’s daughter, Addisyn, is 13 — she’s two years younger than Anabelle — and her road through childhood has been tough to navigate. Addisyn can neither talk nor walk. For years, the family could not find anti-seizure medication that prevented daily attacks, often times numbering in double digits.
In 2015, Addiysn was accepted into a clinical trial, one funded by the Faneca 66 Foundation, to test the effectiveness of CBD in Sturge-Weber patients. She was among six kids who started in a program lasting more than three years.
“It was like a dream come true,” Krissta said. “(The Fanecas) have done so much for the cause and for us. I know they are a big NFL family, but they are such down-to-earth people.”
Comi used Epidiolex, a brand-name, pharmaceutical-grade CBD product derived from marijuana, in her trials. It contains no THC, the euphoric chemical that occurs naturally in marijuana.
In 2018, the FDA green-lighted the Epidiolex oral solution for treatment of seizures associated with two rare and severe forms of epilepsy. The drug has yet to win government approval for Sturge-Weber, but thanks to the exhaustive research and trials, Comi is able to clinically prescribe it to patients.
The drug, fully covered by Krissta’s insurance, dramatically has reduced the number of seizures her daughter suffers. The child's quality of life also has improved.
“It has changed everything,” Krissta said. “Addiysn can now identify the first three letters in her name and count the first three numbers. I know that may not sound like much to some people, but it’s a sign of progress.”
The Fanecas are not ones satisfied with small steps. Alan didn’t just follow through on a pledge to lose weight after retirement, he shed 100 pounds and completed a marathon in under four hours in 2014.
Nowadays, the 6-foot-5 former offensive lineman weighs 235 pounds. When it comes to Sturge-Weber funding, he’s also in it for the long run.
“The family's support is ongoing,” Comi said. "They are still helping to fund lab-based research and clinical trials."
ROSS FAMILY
Krissta Ross and Anabelle Faneca in 2019.
'QUIET PERSISTENCE'
Faneca missed one game due to injury in 13 NFL seasons, playing through pain few of us can fathom. He will tell you he’s the second-toughest member of his household.
How many times can a father witness his oldest child get knocked back by a disorder only to regain her footing and zest for life?
Following the traumatic night in 2013, Anabelle had to be taught how to walk, talk, read and ride a bike again. It wasn't the first time she had undergone such a cognitive reboot.
“To watch your daughter fight, and struggle at times, to learn basic life functions again puts you as a parent in a humbling place,” Faneca said. “That resilience and power is inside kids, but rarely do you see it come out when they are so young. The courage and determination she showed was simply inspiring to Julie and I. It was definitely a group effort and brought us even closer together.”
With the help of her favorite doctor, Anabelle has been seizure-free for nearly eight years. The family is so pleased with the progression it felt comfortable relocating to Virginia Beach, Va., a four-hour drive from Baltimore.
Anabelle, a 10th-grader, is thriving in school. The 15-year-old has participated in some sports, and has joined the workforce, carving wood into trays, signs and other items at a Virginia Beach store. Building and maintaining physical strength remains a focus as Julie constantly reminds Anabelle to use her left hand when doing chores.
“She has taken the strides she has because there’s a quiet persistence about her,” Dr. Comi said of Anabelle. “She just doesn’t give up.”
The teenage girl and her father share a passion for woodworking. There’s also a love for the Steelers and for reminiscing about his playing days.
“Anabelle and I enjoy lots of things,” Faneca said. “I think her being the oldest and having been around during my career, she definitely enjoys reliving moments with me when (the opportunities) come around.”
She and her two siblings should get their fill of nostalgia in August. Former Steelers and fellow Hall of Famers Jerome Bettis and Troy Polamalu can tell the kids plenty of stories about dad’s glory days when they gather in Canton.
It was Faneca who threw the key block that sprung Willie Parker’s 75-yard touchdown gallop, the longest run in Super Bowl history. A decade after retiring, ole No. 66 is still opening holes, allowing others to run to daylight.
Krissta Ross, whose family lives in Lathrope, Calif., initially didn't think she could afford to enroll her daughter in the Epidiolex clinical trial. Acceptance in the program required lengthy hotel stays in Baltimore over a three-year span. Where would she get the money?
Addisyn's mother never saw a bill. Inquiring about the cost, Krissta was told the Fanecas had covered it all.
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Anyone looking for more information on Sturge-Weber syndrome or to donate to the Kennedy-Krieger Institute's research can do so by clicking this link.
