Former St. Helenan treks across Norway, raises $1.07 million for PKU awareness

Former St. Helenan treks across Norway, raises $1.07 million for PKU awareness

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TRONDHEIM, Norway — Former St. Helena mother Alison Michaux Reynolds completed her nine-day trek across Norway at the end of last month beneath a blue, windless sky that belied the brutal weather she endured most of the journey.

Reynolds, a 46-year-old mother of four who now resides in Washington D.C., made the trek to raise money and awareness for Phenylketonuria or PKU, a rare metabolic disorder her eldest daughter, Tia has suffered from since her birth here 17 years ago.

Editor’s Note: Preston wrote about Reynolds’ “Crossing for a Cure” in the Feb. 13 edition of the St. Helena Star.

Amid constantly changing weather conditions, Reynolds and her guide, Elise Koren of Oslo-based Norrøna Hvitserk Adventure, traversed 120-miles of Norwegian wilderness in the hope of inspiring the sort of support — monetary and intellectual — required to jump start research funding for a cure.

The high-risk gamble paid off. By the time Reynolds hauled her bright blue and orange sled across the finish line, the effort had raised $1.07 million in online donations collected on the website, “Crossing Norway for a Cure.”

Funds raised will be appropriated by the National PKU Alliance, a nonprofit that Reynolds helped found and which as relationships with various research labs here and in Europe. That scientists from a handful of those labs were on hand to witness Reynolds finish underscores how much the effort mattered.

Reynolds, who this reporter accompanied the final miles of the trek, looked exhausted but also visibly relieved as she poled her way up the last hill before the finish line.

“I was prepared for everything but the elements,” said Reynolds, driving her narrow Fischer skis forward up the final hill to the finish line. “It’s hard to be in the cold and wind for that long.”

No cure for PKU

At a time when Americans everywhere are grappling with the spread of COVID-19, Reynolds’ mission to cure Tia may resonate more than usual. As the general public is quickly learning, incurable disease, however rare, makes for a frightening day-to-day reality for patients and families.

PKU, a disease first identified in Norway 85 years ago by Ivar Asbjorn Følling, afflicts one in 10,000 to 15,000 newborns a year in the U.S. Patients born with PKU are unable to metabolize an essential amino acid called Phenylalanine or Phe found in most proteins. As Phe builds in the system, it turns toxic and starts to attack the nervous system. Without strict management of protein intake, PKU patients become progressively disabled, both mentally and physically. While treatments exist to manage the disease, there is no cure.

Even though PKU testing in newborns is mandatory in the United States, most Americans are unaware of the disease, which is why Reynolds took to her skis. As Reynolds noted pre-departure, “I wanted to do something that would really inspire people. Another ballroom fundraiser wasn’t going to do it.” Reynolds would know. Since learning of Tia’s diagnosis days after her birth, Reynolds and her family have helped raised some $7 million for PKU drug treatments.

As fundraisers go, Reynolds’ trek is one for the books.

Near blizzard conditions

From the outset of their east-west journey, the elements were against the pair. The first five of nine days high winds and snow flurries made for slow going and longer hours in order to cover the distances need to stay on schedule. A heavy snowstorm the week before departure added to the strain by raising the risk of avalanche and also buried crevasses. Near blizzard conditions on two occasions forced Koren and Reynolds to wait out storms in rustic huts situated near their route.

Traveling single file, the two women took turns breaking trail as they pulled their sleds up and down hilly terrain. During the day, wind and sun burned Reynolds’ face and eyes while at night, howling winds and frigid temperatures made sound sleep hard to come by.

Making camp after a day of skiing was rough. Reynolds recalled lots of packing and shoveling of snow as well as building barrier walls that shielded their tent and cook stove from the wind.

Windburn, sunburn, shin pain, and anxiety were endured. There were losses: a spare jacket was carried away by the wind; a zipper from a boot froze overnight and broke. (A water-repellent gator, wrapped around the damaged boot, kept the snow out for the remainder of the trip). According to Reynolds, there were times, particularly early in the journey where it was a struggle “to stay positive.”

To keep the blues away, Reynolds decided to “celebrate the small successes” like making a “nice ice block for the tent’s wind wall or leading at a good pace.” When tedium set in, she sang the Sound of Music soundtrack over and over again.

As trail partners go, Koren said Reynolds proved her mettle at every turn. “Alison did everything I needed her to do and she was always positive and hard working,” said Koren, who on the eighth day asked Reynolds to cross a frozen lake with her sled in order to avoid a possible avalanche.

Dr. Følling, who discovered PKU, died in 1977 so he wasn’t there to see Reynolds cross the finish. In his stead were his grandson and granddaughter, both of whom skied out to meet Reynolds for the final leg of her journey.

“My grandfather would be so proud of Alison,” said Geir Ivar Følling Elgjo about his namesake and biochemist ancestor. Though his grandfather might require some explanation as to how a cross-country ski trek could lead to scientific results, Elgjo felt he’d have no problem relating to Reynolds. In her windburned visage, Dr. Følling might even recall the determined Norwegian mother who first pressed him him to investigate the strange illness slowly destroying her two children.

Holly Hubbard Preston is a St. Helena-based freelance writer.

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