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Wake Up Narcolepsy
updated February 1, 2017
A great athlete and student, Clark was just thirteen years old when he had several concussions in one year. It began with a snowboarding concussion during Spring Break 2013. Then eight months later, Clark was accidentally punched in the face playing football. Within two days of that second concussion, Clark began to have headaches, memory issues and lost the use of his right foot. He was rushed to the hospital by ambulance because ER doctors' suspected that Clark was having a stroke. After tests ruled that out, we were left with no answers. Doctor after doctor told us Clark needed time to heal from his concussions but by February 2014, (almost a year after his first concussion) Clark was sleeping up to 20 hours a day, having daytime hallucinations and horrible nightmares. Clark did regain use of his foot, but we knew something was seriously wrong with our son. Every pediatric neurologist we saw would send Clark home to rest but Clark was disappearing before our very eyes.
By March 2014, Clark was unable to go to school, play sports or see friends anymore. It was a very, very difficult time as Clark's days and nights became one continuous sleep state. Of course friends, coaches and teachers couldn't understand and we didn't know what to do next. Houston is known for some of the greatest pediatric hospitals in the world, but no one had any answers for us. We began to feel desperate as Clark could no longer stay awake.
He was losing weight and
atrophy was setting in from him not moving.
Finally, we were referred to Dr. Todd Swick, a leading expert in neurological sleep disorders. After seven pediatric neurologists and
brain-injury specialists across America,
Clark was finally diagnosised in May 2014, with
A rare diagnosis caused by head trauma and brain injury. We learned that Clark had damaged his brain stem
and the area that controls wakefulness.
Clark exhibited all the classic symptoms of Narcolepsy:
Excessive Daytime Sleepiness (EDS),
Disrupted Night-time sleep (DNS),
and Sleep Paralysis.
Clark's friends and siblings couldn't grasp what Clark was going through on a daily basis. All of us just wanted Clark to wake up and
it was very scary for his two little sisters and his older brother
to see him always laying in bed asleep. It was as if Clark had disappeared.
Our family was devastated and we felt powerless to help him.
One of Clark's friend's invented the word "Clarkolepsy" when asked why Clark didn't go to school anymore. That funny, play on words took on a life of it's own. We decided to use it for our website to help draw
awareness to the seriousness of concussions in children and
update everyone on Clark's progress.
But Clark's journey isn't over...
Because Narcolepsy due to head-injury is extremely rare, we decided to have Clark's DNA tested and look for any gene-markers in him. That test revealed Clark did not carry the Narcolepsy gene. When Clark's neurologist saw this, he immediately ordered a spinal tap for Clark.
In December 2015, we were sent to
Dr. David Rye, at Emory University, an expert in hypersomnia research.
The spinal tap revealed Clark had all normal levels of brain chemicals, including orexin. (Orexin is the chemical in one's hypothalamus
that keeps both humans and animals awake)
We were overjoyed to finally learn Clark's injury did not result in
loss of any brain chemicals, which can happen. Now we have
the hope that it may just be a matter of time for his brain to restore itself.
We still are committed to keep going in our search for a cure and
help Clark get his life fully restored.
Each week is still full of research and doctors' appointments.
Clark's case has now been accepted by the
Mayo-Clinic and we have taken him three times
to Cerebrum Brain Center,
which speacializes in the aftermath of traumatic brain injury (TBI). Clark is now meeting other adults, teens, children and American soilders who have all suffered like him after TBI. It is bittersweet to meet others but
it helps Clark not feel so alone and such an isolated case.
Since 2014, Clark has attended 1/2 of eighth grade and a 1/3 of ninth grade and has been on Homebound with Memorial High School(MHS) his sophomore and junior years. MHS has fully supported and educated Clark
under their Homebound status for students
with disabilities and chronic illness.
Depending on Clark's wakefulness, he receives 4-6 hours
of instruction per week.
The rest is up to him to learn on his own, which is no easy feat.
It is Clark's hope to return to the classroom one day soon and
add all parts of his life back one piece at a time. As of today,
Clark can stay awake 8-12 hours at a time, and he gets better every year. Daily naps allow his brain a break as it continues to heal.
Student-athletes who suffer concussions truly deserve our respect and compassion. Every day these kids fight to hold onto their interests, hopes and dreams because they feel like they are slipping away. While recovering, these kids can lose the sport they love because it may have caused the head injury.
This is very difficult to accept for any kid. It was hard for us to accept, too, because our family has loved watching Clark play all his sports. As a freshman, Clark made the varsity teams for football, lacrosse and soccer.
Though Clark is medically cleared to play all sports again, he made the difficult decision to not play contact football or soccer anymore.
You'd think that would be such an obvious decision after all he's been through, but it wasn't.
Clark kept his favorite, spring sport so you can still find him on the
Memorial Mustangs varsity lacrosse team as #23.
We are so grateful to our Memorial community, Grace Bible Church
and our Kanakuk family for all their love and support these past 3 1/2 years.
We are trusting God to heal Clark completely one day. But for now we will be an advocate for our son and
all other student-athletes who sustain concussions.
"What does your God require of you?
To seek justice, love mercy and walk humbly with your God."