DC mother of four treks across Norway in massive snow storm for daughter with rare disease
UPDATE: Earlier this year, DC resident Alison Reynolds completed her nearly 125 mile cross-county skiing trek across Norway to raise money and awareness for a rare disease impacting thousands of children including her daughter. Reynolds and her world-class guide expected challenges during their week-long journey. But a massive snow storm that raged for days placed them in harm’s way. Reynolds sat down with our Jay Korff and recounted in detail the drama that unfolded while Crossing Norway from avoiding avalanches to staving off hypothermia.
NEW DEVELOPMENT: The gene editing technique called CRISPR being used by researchers to treat and potentially cure PKU is now being used to come up with a quicker and more affordable test for COVID-19.
Alison Reynolds cross-country skiing expedition across Norway was supposed to be tranquil and reflective. Day one started off as they had hoped. But they new on the horizon a storm was heading their way.
“It was wild because the day started warm and clear. It was a bluebird sunny day,” says Reynolds.
Soon after Reynolds and her expert back-country guide Elise Koren embarked on their multi-day journey across this frozen expanse they were caught in the middle of an extreme storm.
Reynolds says, “All of sudden a major wind gust came in with clouds and gusts up to 40 mph. I had trouble standing up at some moments.”
Norway’s serene landscape engulfed the pair in a torrent of wind and white.
“I knew that that storm would last a few days and I wondered how in the world are we going to make progress in these kinds of conditions,” recalls Reynolds.
Reynolds says four feet of snow fell in only 3 days, forcing them to travel at half-speed and alter course to avoid life-threatening perils.
"We decided that we would keep going as long as we knew we would be safe. And safe meant, not in avalanche danger. That was the biggest risk at that point and time,” adds Reynolds.
Despite months of training, pulling a 90-pound sled in deep snow for days pushed this 46-year-old mother of four beyond her limits. Instead of solace, her focus was navigating the terrain and fending off hypothermia.
Reynolds admits, “I broke down several times during the trip. I knew though that I had to make it back. I have 4 children and a daughter I was doing this for. Every step we took forward, because we were stepped and not really skiing, I kept saying in my brain I’m closer to my babies, I’m closer to my babies and I did that the whole way through.”
Reynolds volunteered to endure these hardships for a very personal reason. Only a day before leaving for Europe Reynolds told us, “You do anything for your children. Tia didn’t choose to have PKU.”
Reynolds daughter Tia Piziali lives with the rare disease PKU. The smallest amount of protein is toxic to her body.
Piziali says, “Just a tablespoon of peanut butter would be enough to give me brain damage and that brain damage is irreversible.”
Years of fundraising led to a recent pharmaceutical breakthrough allowing Tia to consume more protein. But this drug is exorbitantly expensive.
“Tia’s shot is covered by insurance and thankfully we have a $100 deductible a month," says Reynolds.
The encouraging news is that Reynolds believes a cure is in reach. So, she hatched the idea of crossing Norway as a fundraiser with the money going to research. She has raised more than a million dollars so far.
“They say that it will be one of the first rare genetic diseases to be cured and we really believe that,” says Reynolds.
And she selected Scandinavia because the scientist who discovered PKU was from Norway: a place now buried in snow and bitter cold.
Reynolds took a GoPro with her during her trek to document what she witnessed. She wasn’t able to use it much because she was so busy focusing on moving forward and staying warm.
One morning she awoke and pointed the camera out of her tent. All you could see was white: a blanket of snow on the ground and snow swirling all around her. The wind howling in the background.
Reynolds says, “Day three and we are about to set out in this. Hoping to find a good place to camp tonight. It’s not great conditions but that’s how it’s been.”
Trudging through hip-high snow was one significant hurdle. Some of her toughest moments came at night. Reynolds and her guide spent an additional 2-2.5 hours every evening building snow walls around their encampment to prevent powerful winds from freezing them out.
“And then at night it was easily -20 Fahrenheit. I had trouble staying warm for most of the trip which was exhausting. I slept in every layer that I packed. I slept in everything. I had three wool base layers on and a down jacket and two base layers and my ski pants and two pairs of socks and down booties.”
Then they awoke one day to the calm beauty of this vast countryside.
And before she knew it, the end was in sight. Her husband Kai skied out to her first. Then her children ran to her in tears.
Reynolds recalls, “Tia and my kids came running across the snow to me to a huge hug. They were crying. I knew they were worried the entire time. We were all so happy to be back together safe and sound.”
Alison Reynolds knows full well, without her world-class guide Elise Koren she would not have survived this trek according Norway.
“And she told me at the end I can’t believe you kept going. I thought you were going to give up. That meant a lot to me. We got through it together. We were a team,” says Reynolds.
And yet this struggle was, to a degree, purposeful. Reynolds wanted to replicate, in her own small way, the battle those with PKU live with every day. So, her only option was crossing Norway.
Reynolds says, “I wanted her to know that she’s not alone in this struggle. No PKU person is alone in this struggle.”
