Twins with rare disorder fight for their lives
Posted by rrichardson May 2nd, 2013, 8:03 pm
Daniel and Forrest Theiss wanted to fight for their country.
Daniel dreamed of becoming an airborne medic in the U.S. Army. Forrest enlisted with the U.S. Marines.
Instead, the 18-year-old identical twins are fighting for their lives after being diagnosed with a genetic condition – so rare it doesn’t even have a name – that causes blood vessels in their body to rip and shred.
Forrest & Daniel Theiss
Daniel and Forrest Theiss. Provided
In the past year and a half, the once healthy and active Mason teens have each undergone multiple surgeries to repair aortas shredded like wet tissue paper. Complications during a surgery in January – Daniel’s third major operation – left him a paraplegic.
For the brothers and their parents, Matt and stepmom Kathy, the journey has been both heartbreaking and harrowing, but also inspiring – a lesson about finding joy in adversity and of the transformational power of family and community.
At first glance, it’s hard to tell Daniel and Forrest apart.
Sharing a 98 percent genetic match, both have the same tall, lanky build, aquiline nose and doleful brown eyes. Even their voices – and their infectious sense of humor – are nearly indistinguishable
The differences, they will tell you, are in the details.
Daniel, the older brother by five minutes, is practical and patient. Forrest, the entertainer, embraces the limelight, while Daniel, the quiet artist, prefers to remain behind-the-scenes.
When Matt’s job as a business analyst moved the family from Long Island, N.Y., to Mason the summer before their senior year in 2011, the boys quickly found their groove at Mason High School.
Daniel joined the cross country team. Forrest tried out for the school musical. Despite a bout of pneumonia that fall that sidelined Daniel, there was little sign of what was to come.
Daniel Theiss at home with stepmom Kathy. Daniel and his identical twin brother Forrest, 18, both suffer from a rare genetic mutation that causes their arteries to rip and shred. The Enquirer/Tony Jones
In January 2012, an observant Army doctor detected a heart murmur in Daniel. That same night, he was overcome by a sudden wave of excruciating stomach pain.
An echocardiogram detected an aortic dissection, an uncommon but often lethal tear in the inner lining of the body’s largest artery. The tear allows blood to surge into the middle layer of the aorta, causing the muscle layers to peel apart.
If the tear ruptures through the aorta’s third and outside wall, death can be almost immediate.
Aortic dissections claimed the lives of actors Lucille Ball and John Ritter.
The Theisses were even more stunned by what came next.
Genetic tests revealed both Daniel and Forrest share a mutation of the ACTA2 gene. The defective gene affects muscular contractions in the aorta and other blood vessels, which can lead to aortic aneurysms and dissections.
Doctors stabilized Daniel and scheduled both boys for surgery after graduation that June.
Two weeks later, in February, Daniel was rushed to Cincinnati Children’s Hospital Medical Center with chest pain
As doctors stabilized Daniel, Forrest felt his left arm go numb. An MRI revealed an ascending aortic dissection. Forrest needed emergency surgery.
Matt made the difficult decision to transfer Forrest to the Cleveland Clinic, where doctors there might save his aortic valves.
“They told me that every half-hour we waited was another 10-15 percent chance Forrest could die,” Matt recalls.
In Cleveland, hospital staff immediately whisked Forrest into surgery, where cardiothoracic surgeon Dr. Eric Roselli sawed through his ribcage to replace his dissected aorta with a synthetic sleeve. Daniel would undergo a similar procedure four days later.
After several months of rehabilitation, Daniel and Forrest came home. They went to prom. Graduated high school. Tried to put the harrowing experience behind them.
Daniel got a job at a local fast food restaurant and planned to become an EMT. Forrest moved to New York to study nursing.
But their ordeal wasn’t over.
In August, Daniel suffered a series of mini-strokes sparked by aneurysms in his carotid arteries. Four months later, his aorta dissected another 20 centimeters.
Forrest flew in from New York for Daniel’s Jan. 22 surgery. As Roselli gathered the family for an update, Forrest suffered a stroke.
Daniel and Forrest’s parallel medical paths would soon diverge. Over the next two days, Daniel fell victim to a spinal stroke and lost all sensation from the waist down.
“Forrest and Daniel are in sync. When one does something, the other has to top it. I didn’t think they were going to medically top each other, but they have,” Kathy says.
FAITH, LAUGHTER SUSTAIN FAMILY
Faith that God has a purpose for the boys is what sustains Matt and Kathy. For Daniel and Forrest, laughter is the best medicine.
The brothers call themselves Forrest Gump and Lt. Dan – a self-deprecating wit that belies a steely determination to live life to the fullest.
“You have to have a good sense of humor about it. Otherwise, you’d be sitting in bed all day thinking, ‘What’s the point?’’’ Daniel says.
But laughter won’t pay the hundreds of thousands of dollars in out-of-pocket medical costs incurred by the Theisses, who’ve dipped into their retirement funds and taken a loan against their house. It won’t pay for the $34,000 home renovation to make their home handicap-accessible or for a variety of assistive devices to help Daniel live independently.
Luckily, the Theisses didn’t move into just any neighborhood. They moved into Mason’s Coddington Reserve.
After the twins’ first surgeries, neighbors in the Theisses’ remarkably close-knit, 10-home cul-de-sac sprang to action, organizing a “meal train,” performing yard work and lending a sympathetic ear. They hope to raise at least $6,000 Saturday at a fundraiser at the Mason American Legion.
The Theisses take nothing for granted. Each day is a gift.
“It’s pretty much guaranteed that their arteries will continue to degenerate,” Matt says. “We know they won’t have a normal life span.”
“The doctors really can’t predict their future,” Kathy adds. “It’s all really in God’s hands.”
Their career goals upended, Daniel and Forrest struggle to redefine themselves. Forrest switched majors from nursing to a one-year auto-diesel repair program. Daniel’s goal is to simply become independent.
“I had a plan A and then I had a plan B,’’ Daniel says. “Now I need a plan C.”
Still, the Thiesses say they are blessed.
“I feel like Jimmy Stewart in ‘It’s a Wonderful Life,’” Matt says. “You like to think you can handle it all, but you can’t and after a while you realize you need a community to raise your family. It’s made me believe it’s about family, friends and helping others.”
IF YOU GO
What: Daniel and Forrest Theiss Fundraiser
When: 7-11 p.m. Saturday
Where: American Legion Hall Post 194, 401 Reading Road, Mason
Tickets: $30. Split-the-pot, raffles, beverages and games additional cost.
Information: Leslie Galley, 513-459-9300; firstname.lastname@example.org.
Donations: Also accepted online at tinyurl.com/bopc5zx