Timothy Bird-Lopez died in his mother’s arms.
David Kirby gasps for breath.
Gus Dreher struggles to walk.
Separated by age and distance, the three are bound by a flag: a flag carried through sludge and ice, held triumphantly on Mount Everest last month.
The flag bears the names of 750 boys and girls bound by a faulty X chromosome and Duchenne muscular dystrophy, a terminal, degenerative disorder.
The Hope-Memory Flag is a 8-foot by 6-foot piece of polyester with names printed in black. As it climbed 17,598 feet up Mount Everest, it raised $50,000 for a cure.
Above the Nepalese horizon, at Everest Base Camp, the names were spoken toward the wind.
The three boys might never climb, but their flag did.
• • •
It starts with the legs.
Early on, Timothy struggled to climb stairs. His parents thought he was being lazy.
But when he was 6, Timothy was diagnosed with Duchenne muscular dystrophy.
"I just remember being so angry, all the time, so angry," said Dee Bird, Timothy’s mother.
After the diagnosis, Timothy’s father left the family and started a new one. He didn’t attend his son’s funeral.
"Because his father lives in a perfect world," said Bird, who quit her job as a medical billings worker to care for her son. "And Timothy was no longer perfect."
It continues with the spine.
At 13, Timothy had surgery to straighten his back so he could breathe better.
Despite his disability, he was accepted to UF in 2007 to pursue a degree in animal sciences. In his three semesters at the university, he averaged a 3.75 grade point average, Bird said.
"I swear he was a genius," she said.
But things didn’t get better.
Timothy would often use a feeding tube, but freshman year, it became a necessity.
"Suddenly he couldn’t eat anymore," Bird said. "He would start choking and hack on his food."
It often ends with heart failure.
On Monday, Feb. 24, 2014, Timothy had two appointments with doctors.
While traveling in a medical bus, the battery in his respirator failed, and he stopped breathing.
He was in a coma for one day.
When Timothy woke, his condition worsened. His heart stopped.
CPR kept him alive, but it broke a rib. The broken rib punctured a lung. And on March 1, Timothy took his last breath in his mother’s arms.
"That night before he died, you could see it in his eyes,’" Bird said. "He didn’t want to die. He was a fighter, and he never wanted to give up."
It’s been almost two years, and she’s kept the critical parts of Timothy’s room with her, even after she moved to a new house.
She sleeps on his bed and uses his computer.
And she still speaks to him.
"I tell him constantly I love him," she said as tears rolled down her cheeks.
In her bedroom, Timothy is still there. His pictures fill her shelves and surround a blue urn with his ashes. A single Coke bottle with Timothy’s name printed on the label stands nearby.
"I do whatever I can in his memory," she said.
When she heard about the flag on Facebook, she sent Timothy’s name in.
"The fact that he went to Mount Everest — he would have really, really loved that," Bird said.
• • •
David Kirby never knew Timothy.
But, like the other boys whose names were printed on the flag, he says they shared something.
"Because we all share something," he said as he struggled for breath.
It’s the struggle for breath that kept David from pursuing a degree in graphic design from Palm Beach State College. It was hard for him to catch his breath as he went from class to class in a wheelchair.
After moving forward a few feet, he needs to stop to breathe.
At 21 years old, David weighs 70 pounds and is roughly the size of an average 12-year-old boy.
"You watch your child go from relatively healthy child to struggling to sit down and stand up," said his mother, Nadine Kirby. "Then you watch your child fully disintegrate to a wheelchair."
Unable to walk, there are metal rods that support David’s spine and breathing machines that surround his bed.
But neither David nor his mother has lost hope.
As a breathing machine quietly whirs through the night, David still dreams of becoming a NASCAR driver. His continued dreams motivate his mother, even as she helps him shower, dress and cough.
"You look at his face, and that motivates you to keep going, to keep pushing, to keep doing better and be a better person," she said.
From their home in Lake Worth, Kirby and her son followed the climbers’ ascent up Mount Everest.
"I thought it was cool that they were gonna climb all the way up there," David said.
Recently, Kirby was invited to help carry the flag when the group climbs another mountain this summer.
For her son, she’s thinking about it.
But she doesn’t lose sight of reality: not knowing where David will be in a year.
• • •
Before the flag, there was Gus.
He was Tonya Dreher’s third child, blond with a wild imagination.
But, like Timothy once did, Gus struggled to climb steps.
At 4, Gus was diagnosed with Duchenne.
Every day, he needs to be fully stretched out to prevent his muscles from tightening.
He takes medication for the fibrosis in his heart, caused by the deterioration of his cardiac muscles. At night, he wears braces on his legs.
As the disorder slowly robs him of his ability to walk, the 10-year-old will begin to depend on a wheelchair.
Four months after Gus’ initial diagnosis, his parents created Hope for Gus, a foundation meant to bring attention to their son’s disorder.
"Some people don’t even know what it is," his mother said. "We’re just trying to get it out there, and get people to see it as something they could feel good about funding."
The first fundraiser Dreher held for her son was a yard sale that raised $1,000.
Dreher continued her activism from behind a computer screen by creating websites and fundraisers devoted to bringing attention to the need for a cure.
About a year ago, she decided to up the stakes.
A former colleague, Chris Balch, hiked last year to raise money for Gus; he raised $25,000 after hiking more than 300 miles. This gave Dreher an idea.
"If he could do that," she said, "what could I do?"
She looked to the world’s largest mountain: Mount Everest.
And they began to make the flag.
• • •
Before she flew to Nepal, Dreher chose a team of hikers.
Originally, Everest to End Duchenne was intended to be a group of parents, each with a child who suffered from Duchenne. But many parents couldn’t afford to leave their kids, so instead it became a group of seven: Dreher, Balch, three friends who know Gus and two relatives of children with Duchenne.
A British filmmaker and two Nepalese guides accompanied the climbers as they ascended Everest.
With his mom on the other end of the world, Gus stayed in New Hampshire with his father and two siblings.
He drew pictures of his mother on a mountain.
As Dreher and the team battled through 15-degree temperatures and altitude sickness, her son was never far from her.
"I had his picture on my backpack the whole way," she said.
His name was also one of several she chanted silently in her mind — the names she would read aloud when she reached Everest Base Camp.
In a plastic bag, she held the flag, on which the names of children from 14 countries were represented.
After nine days of climbing, the ground under her feet leveled out.
On Oct. 19, the hikers had reached their destination but were advised not to stay long.
For the next hour, the seven hikers read about a hundred names each — Timothy, David and Gus among the heap. Clutching a microphone, they read the names of those on the flag and the names that were requested as families learned of their trek.
As the air became thinner, they struggled to breathe. For the moment, they could feel what their loved ones had felt.
For the moment, Timothy, David and Gus climbed Everest.
"We feel like our boys climb mountains every day," Dreher said. "The fact that they could never climb a mountain… We do it for them."
• • •
Dee Bird sees her son everywhere.
She sees him in her dogs, the butterflies in her garden and the music he once enjoyed.
All of it breaks her heart.
On the day Timothy’s name was read on Everest, she saw him in the sparrow that flew through her kitchen window.
She spoke with the bird and knew Timothy was there.
"The fact that they made it to Mount Everest means they are never forgotten," she said.
Even as she continues to grieve for her son, Bird said she’s doing what she can to make sure her son, and others, are never forgotten.
She plans to build a memory wall for those who have died from Duchenne muscular dystrophy.
"This disease has no boundaries," she said.
Nearly 300 miles away, Kirby feels blessed to still be with her son.
While Bird plans to build a wall, Kirby built a foundation: Light it Up Green for Muscular Dystrophy.
Through her organization, Kirby said she successfully petitioned 46 states in the U.S. to recognize August as National Muscular Dystrophy Month. Step by step, she says, she will keep fighting for her son and the countless others in his position, even if David might not benefit from it.
"If there was a cure, would we be able to reverse all the damage that has been done?" she asked.
But the ultimate goal is still finding a cure.
"If you don’t keep going, then they can’t keep going," she said.
This is why Dreher keeps going, and is already looking toward the next climb.
The Everest climb raised $50,000 from a GoFundMe and from sponsors, which she and her husband plan to use to fund research for a cure. However, the sum is slim compared to at least $50,000 already spent to take care of Gus, the hundreds of thousands of dollars needed to pay for medical fees and the nurses David requires, and the million dollars in fees Timothy needed.
A cure would not only save the families’ money, but it would save their sons’ lives.
"That’s the thing we hope and pray for when we go to bed at night and when we wake up in the morning," Dreher said.
She wonders to herself every day if she’s doing enough for her kid.
Most of the time, her answer is a stern no. But after the climb, the answer has become yes.
The flag, for now, is with another climber, whose son has Duchenne. It will be a part of a school presentation in the U.S. and a mountain climb in Scotland before it returns to Dreher.
For now, the mothers will wage their separate battles as they grieve and care for their sons. But they will soon reconnect this summer when the flag scales another mountain in the U.S. and they work to raise more money for a cure.
It’s a future they want to leave for their sons and the generations to follow.
"He’ll be able to say, ‘I know my parents did everything they were able to do,’" Dreher said.
Contact Martin Vassolo at mvassolo@alligator.org and follow him on Twitter @martindvassolo
Standing on Mt. Everest, the group of climbers for Everest to End Duchenne, led by Tanya Dreher, post the Hope-Memory flag with the names of 750 boys and girls who had or have Duchenne Muscular Dystrophy, a terminal, degenerative disorder without a cure.
Dee Bird holds a photo album of her son Timothy Bird-Lopez, who died March 1 due to complications of Duchenne Muscular Dystrophy. His dog, Lizzy, who sits in the crook of Dee Bird’s arm, is among the many reminders of Timothy in her bedroom, including his computer, his bed and his pictures.
On a shelf in Dee Bird’s bedroom, pictures, candles and a Coke bottle labeled “Timothy” surround Timothy Bird-Lopez’s urn to memorialize his life.
