Magazine Writing

Patrick Schuster
Article #3
A Life Filled with Loss
Tysen Cook is 16 years old and has experienced more loss over the last 11 years than
most people will experience in a lifetime. Around 5 years old Tysen was tripping and
falling quite often. However,
he was still doing what kids his
age were doing. He was
playing T-ball, playing football,
playing tag, and all the fun
physical activities 5 year olds
participate in. It wasn't until
he passed out one day in the
school bathroom that they
realized there was more going
on than just clumsiness.
Source: Freidreichs Ataxia Research Alliance
Several tests were run and it
was determined that he had
Friedreich's Ataxia. According
to the Friedrichs Ataxia
Research Alliance (FARA)
Friedrichs Ataxia is a lifeshortening, degenerative
neuro-muscular disorder.
Symptoms include: loss of
coordination, fatigue, muscle
loss, slurred speech, vision
impairment, aggressive
scoliosis, and enlarged heart.
This diagnosis would prove to
take almost everything that a
happy, healthy child looks
forward to.
I just felt angry, angry
that this had to happen to

Tysen with the Director of Sanford Childrens Miracle Network Erin Rohrer

my beautiful, active, sport loving son who dreamed of being a professional football
player. I just didnt, couldnt and wouldnt accept his diagnosis and it was weeks before
I even told my immediate family because I had to process it myself, said Tysens
mother Nicole Rieffenberger.
Tysen continued to play baseball, football, and all the activities that kids play on the
playground, but things kept getting progressively worse, and he kept tripping and
falling.
And if the tripping and falling wasnt enough, his heart was starting to fail.
In fourth grade, he had to have major heart surgery. He spent a large portion of fourth
grade recovering from surgery. Due to his failing motor skills and the condition of his
heart, he was becoming more and more familiar with a manual wheelchair. The days of
running around became less and less. The heart surgery saved his life but would be one
of the many hurdles he would have to overcome. He got accustomed to idea of having
to use the manual
wheelchair and
began to feel
content with it. In
seventh grade, his
mom and teachers
realized that he
could no longer
function in the
classroom without
the assistance of a
full time
paraprofessional.
He needed
someone to write
for him as his
small motor skills
were also deteriorating. Now he would have to have someone follow him around to
every class and deal with the embarrassment of having a permanent "helper".
It was really hard at first because I wanted to keep doing the little things on my own,
but I kept struggling, so I had no choice...I needed a helper, said Tysen.

In the meantime, his mind was functioning as well as all the other seventh graders. In
fact, he was in all of the accelerated classes. Physically,his strength started to
deteriorate even more. By Christmas of his seventh grade year he was told he needed
to use an electric wheelchair. That worried him because he felt the manual wheelchair
kept him strong and now his arms would be even weaker without the use of them, but
he had no choice but to embrace the electric wheelchair.
Late middle school and early high school would prove to be the toughest time
emotionally for Tysen. His best friends began to get so busy with athletics and social
activities. Their active lives didn't fit into his inactive, complicated life.
The greatest challenge has been trying to keep Tysen a normal child. It gets harder as
he gets older to do this, all of his friends are driving, playing sports, have girlfriends,
going to parties and unfortunately, he either cant or is not asked to do those things. It is
heart-wrenching as a mother to see him go through bouts of depression about this,
said Nicole.
By ninth grade, Tysen's spine was curved from the scoliosis so badly that his lungs were
functioning very poorly. He would need to have a steel rod put into his spine, in order
for his lungs to function properly again. In February of last year, he had surgery at
Mayo Clinic. He spent much of the rest of the year in his bed getting his strength back.
He "toughed" it out and finished the last month in school getting used to his new spine.
He loves football and has felt fortunate to have met some of the South Dakota State
Jackrabbit football players. However, they might tell you they were the fortunate ones.
Brandon Andrews, wide receiver for the Jackrabbits has met with Tysen on many
occasions and had this to say about him, The amount of strength and courage that
Tysen possesses is 10 times that of his favorite football players. To be in the presence of a
kid as inspiring as he is, I dont think there is any greater feeling. Its been a true
blessing to meet Tysen and more of an honor than hell ever know.
But Tysen still wishes more than anything that he could have the opportunity to play
football again.
I would love to put the pads on and play like those guys do, its awesome watching,
but Id really just love to play, Tysen said.

Fall is the best time of the year for him because he lives vicariously through the football
players. His life will more than likely not be long but his story of triumph through all
the hardships he has faced at such a young age will live forever.