Big hills to climb: Group takes on Mount Everest, cure for debilitating disease
Shae Annis received specific instructions from Gus Dreher of everything he wants her to take pictures of while she is on a 15-day hiking trip to Mount Everest.
First and foremost, Shae was instructed to take pictures of every stray dog she sees. In addition, 12-year-old Gus wants a picture of footprints left by a yeti. And Gus would like to see pictures of chickens and red pandas.
"He gave me a whole list of what he wants me to take pictures of," said Shae, a 17-year-old high school senior from Garfield. "It was interesting that he knew so much about this place."
Shae, along with her mom, Natalie Johnson Annis, and eight other people, including two other women who have ties to Alexandria, Cathy Grove Barker and Gus's mom, Tonya Bakewell Dreher, are embarking on the trip to Nepal beginning Monday, Sept. 25.
The reason? To raise money and awareness for Duchenne muscular dystrophy, which causes weakening of the muscles. Duchenne's, which almost exclusively affects boys, is the most severe of all the muscular dystrophies.
Gus Dreher was diagnosed with Duchenne's when he was 4-years-old.
His mom, Tonya, graduated in 1988 from Alexandria, along with Cathy and Natalie. These three women have been lifelong friends.
The Drehers now live in New Hampshire. Cathy lives in Texas and Natalie and Shae live in Garfield.
The trek the four women — Tonya, Cathy, Natalie and Shae — are embarking on is called Everest to End Duchenne. This is the second trek for Tonya, who started a foundation, Hope for Gus, that raises money for Duchenne's research after her son was diagnosed. Anyone who takes this climb has to fully fund the trip themselves and then they must also raise at least $1,000 each for the foundation. They all stressed that all the funds raised will go to research. None of the money is for the trip.
Tonya said her goal with the foundation, which was named after her son Gus, is to raise as much money as possible for Duchenne's research. There currently is no cure and no real treatment.
"And that is the most devastating thing about Duchenne's," she said.
Gus was diagnosed in November of 2010. Five months later, Hope for Gus was formed. Tonya left her job as a teacher to devote all of her time to the organization and the research. The first trek to Nepal took place in 2015 and it raised about $50,000 for medical research. For this year's trip, Tonya said the goal is to raise $100,000. And again, all the money raised will go to the foundation and medical research. The money this time, she said, will be used to fund a gene therapy for Duchenne's, which she said, "is the most exciting thing out there right now."
Tonya is excited for this trip to have two of her lifelong friends join her, along with Natalie's daughter, Shae.
"There are people who step up the plate and then there are those who go away," said Tonya. "And these ladies are definitely stepping up. They are putting their lives on hold and taking this trip. It means so much."
Natalie, who is also looking forward to the trip especially because she gets to do it with her daughter, Shae, said it is heartbreaking to see what Gus has to go through. She said Tonya is a breast cancer survivor and that this family has had "hit after hit," but that it shows what fighters they all are.
Natalie also has a son the same age as Gus. Seeing how Gus has deteriorated is hard, she said.
"Gus is struggling and it is very heartbreaking," she said. "We consider them our close friends and we want to do what we can."
When it comes to training, Natalie said it has been a bit of challenge living in flatland country, but that she and Shae have used Inspiration Peak because, "It's as close as we can get to a real mountain around here."
The mother-daughter duo climbs up and down Inspiration Peak, which is 22 miles northwest of Alexandria and is the highest peak in Otter Tail County with an elevation of 1,750 feet.
They have been climbing 10-12 times up and down, which typically takes about two and a half hours, she said.
"I am so excited to experience this with Shae and I am super proud of her that she is willing to do this," said Natalie.
Shae said the trek was an opportunity she didn't want to miss out on.
"I am doing this for Gus," she said. "I've known him for several years. And this is a way we can try and put ourselves in their shoes."
She said the trips means a lot to her because it is "kind of the last hurrah" before she heads off to college next year.
Cathy called her friend, Tonya, amazing. Something she said to her this past summer made Cathy realize she needed to take the trip.
"She made a comment to me that she started this (the organization) to try and find a cure and that if she failed, her son would die," Cathy said. "It just broke my heart. I am so happy to be a part of this."
Cathy, who spends most of her summers in Alexandria, also used Inspiration Peak for training.
"We go out there and go up and down 12 times, but it's not even close," she said. "But it's all there is around here."
The actual trip, according to the itinerary, will take 18 days. The group will arrive in Kathmandu on Day one and will have a free day before the actual trek begins. The hope is to reach the base camp of Mount Everest on Day 13. On Day 16, the group will take a flight back to Kathmandu with free or spare days scheduled for Days 17 and 18.
What is Duchenne's?
Duchenne muscular dystrophy, like all muscular dystrophies, causes weakening of the muscles. Duchenne's is a recessive genetic mutation that occurs on the X chromosome. As a result, it almost exclusively affects boys. Unfortunately for the boys who have been diagnosed with Duchenne's, it is the most severe of all the muscular dystrophies. Boys with this disease are diagnosed earlier, usually between 3 and 5 years of age. They lose muscle function more quickly and many boys are in wheelchairs between the ages of 10 and 12, and they die earlier. Most boys with Duchenne's die in their mid-20s.
Here are some ways to learn more about the trip and to follow along:
Everest to End Duchenne Facebook page: https://www.facebook.com/everesttoendduchenne/
Hope for Gus foundation website: hopeforgus.org/
Shae's Instagram: https://www.instagram.com/shaeandgusgotoeverest/
These are the GoFundMe links for each person: