The Washington Post - 05.03.2020

B2 EZ RE THE WASHINGTON POST.THURSDAy, MARCH 5 , 2020

stream if they eat foods with high

levels of protein, such as milk,

nuts, p asta a nd cheese. Typically, a

PKU patient can consume six to

seven grams of p rotein a day, com-

pared with other adults, who can

consume at least 50 to 60 grams

daily. High Phe levels in a person

with PKU can lead to brain dam-

age.

Tia has used a drug called

P alynziq since last fall to treat her

PKU, injecting it daily into her

stomach. It lowers her Phe levels

and h as led T ia to a less restrictive

diet.

Reynolds decided to ski across

Norway to raise awareness for the

disorder after years of raising

money through more traditional

fundraisers and galas. She chose

Norway to pay tribute to the Nor-

wegian biochemist who discov-

ered and n amed P KU.

Reynolds said the trip didn’t

always go as she expected. Her

journey to the backcountry was

delayed after an avalanche hit the

tracks in front of her train, causing

a 17-hour delay with little food and

water. She and her guide then bat-

tled heavier-than-expected snow,

wind gusts of 40 mph and shiver-

ing cold.

It took two hours for the pair to

set up their camp e ach night. They

ate oatmeal and f reeze-dried food,

and Reynolds slept in three wool

shirts, two pairs of pants, a hat,

gloves and j ackets.

“It required intense focus, and

staying warm was the biggest

challenge,” Reynolds said. “Some-

times you were just kicking your

legs together to stay w arm.”

Reynolds s aid she didn’t h ave as

much time to reflect on her fami-

ly’s dealings with PKU as she had

hoped, as skiing commanded con-

stant attention.

For two nights, because of the

heavy snow and high winds, she

and her guide stayed in a cabin

that had no heat. After one of her

jackets blew away in the first few

days, she used a special jacket she

brought along — the one her

mother wore w hen she s kied to the

North Pole 20 y ears earlier.

“My lowest points were early

on,” Reynolds said. “I thought the

weather was going to make it not

doable. But I knew we had to get

through i t.”

Reynolds a nd h er g uide skied a s

many miles as they had planned

but sometimes at a slower rate

because of t he weather, l eaving no

days f or rest.

The two chatted while skiing or

in the tent about food, American

culture a nd politics, a nd t he w arm

places Reynolds wanted to visit

after leaving Norway. Tia was

among her family members and

friends who met her as the trek

ended. Reynolds said her daugh-

ter became emotional as her

mother crossed the finish line.

There a re no cold-weather t rips

in her future, Reynolds said. She

plans to focus on her family and

visit someplace warm with them

in the spring.

On the final day of her journey,

she w rote o n her blog that she had

crossed the finish line, but “the

real winners are everyone with

PKU.”

[email protected]

THE DISTRICT

COURTESY OF ALISON REYNOLDS

FROM TOP: Alison Reynolds, 4 6, of Northwest Washington pulls an 8 0-pound sled while skiing

Norway’s backcountry. Reynolds and her daughter Tia, who has phenylketonuria, often referred to as

PKU. Reynolds and her ski guide slept in a tent most nights after skiing almost 15 miles each day.

Reynolds trains on the C&O Canal in January. She spent over a year preparing for the excursion.

MICHAEL S. WILLIAMSON/THE WASHINGTON POST

BY DANA HEDGPETH

A D.C. woman who skied
125 miles across Norway to raise
awareness for her daughter’s rare
genetic disorder returned to the
comforts of home this week.
Alison Reynolds, 46, raised
about $1 million — more than
twice her original goal — from
businesses, friends, family and
other supporters to fund research
for phenylketonuria, often re-
ferred to as PKU, a metabolic con-
dition afflicting her 17-year-old
daughter. She started her ski ad-
venture Feb. 21 and returned
home to Northwest Washington
on Monday.

She and a Norwegian ski guide
skied almost 15 miles each day
near the border with Sweden.
They each pulled an 80-pound
sled containing water, food and
equipment, and slept in a tent
most nights. Reynolds said her
guide told her that s he was in good
shape f or the adventure.
Reynolds, a mother of four who
trained for more than a year, said
the adventure was “amazing” but
admitted that she was tired. She
said dozens of letters and cards
were waiting when she got home.
Many well-wishers said their
church or school had prayed for
her or lit a candle each day she
skied.
“I was thrilled that so many
people were touched by our story,”
she said. “I owe a huge amount of
gratitude to friends and perfect
strangers. People are fundamen-
tally g ood.”
Reynolds’s daughter Tia has
had PKU since birth. A person
with the condition has a damaged
enzyme that breaks down an ami-
no acid called phenylalanine, or
Phe, which i s found i n protein and
many foods.
Without that enzyme t o process
Phe, PKU patients c an have a dan-
gerous buildup in the blood-

Woman’s ski trek raises $1 million for rare genetic disorder

COURTESY OF ALISON REYNOLDS

MICHAEL S. WILLIAMSON/THE WASHINGTON POST

A lison Reynolds, 46,

skied 125 miles across

Norway to promote

research into

phenylketonuria.

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