Patient Stories

Our journey with GBS began Wednesday, February 18, 2009 when my 2.5 year old son Henry
was diagnosed with double ear infections. It was the first time he had ever needed antibiotics in his
short life, and they seemed to do the trick almost immediately. Henry woke up on Monday, February 23
and told me he felt “Wobbly”. Everyone assured me it was just the double ear infection, however, my gut told me it was something more so I took him to the pediatric ER at the University of New Mexico in
Albuquerque. By the time we arrived around 10:00 am, Henry could no longer walk unassisted. The ER
doctor admitted he had no idea what was going on, and by that evening, Henry could no longer walk,
stand, or even sit up on his own. The next day, the ER doctor called a neurologist to examine Henry, and within 15 minutes she diagnosed GBS, ordered a lumbar puncture to confirm, then ordered iViG infusion therapy. I specifically remember my husband, who is a physician, telling me, ”Whatever you do, do not
go look this up online.” Wise words. Henry had four days of iVig infusions and we were extremely lucky
that he was diagnosed quickly, and the infusions worked – he did not need to be intubated, but his battle was far from over. My active two and a half year old lay listless in a big hospital bed, refusing to eat, unable to move, and in excruciating pain. When it became clear the treatment worked, we were moved
to a regular hospital bed awaiting a bed in the Carrie Tingley Rehab hospital. Henry had lost 7 lbs off his
little frame, and endured a swallow test to ensure his body was capable of swallowing without
aspirating. I wouldn’t say he passed with flying colors, however, he passed with flying dye! My little
warrior, strapped to a papoose style board upright, continued to spit out any dye the tech tried getting
him to swallow. With a chuckle, they agreed he could swallow without fear of aspirating.
Henry was admitted to the rehab hospital where he received about 45 minutes of PT per
day. We had a wonderful staff of nurses, doctors, and therapists, but we felt we could work more with
Henry in our home, where he could regain strength and mobility by moving around the house. This was
February, right in the middle of flu season, we wanted our kiddo out of the hospital as soon as possible
to avoid any infections. Our wish was granted, after 16 long days, Henry was discharged with orders for
outpatient PT 3 times a week, plus in-home PT once a week. He ended up having physical therapy for
the next 3 years as he had continued weakness in his legs and back. He was fitted with orthotics when
he was 3 to help correct the toe walking he adopted to ease pain in his calves when he walked or stood.
He was also fitted with casts on both legs when he was 8 to help further stretch out the muscles and
tendons in his lower legs.
Our brave warrior is now an active 16 year old that enjoys video games, fishing, and competing
on the high school sailing team. Thankfully, he doesn’t remember the day nearly 14 years ago that changed our
family forever, nor the grueling physical therapy that followed and ultimately led to a complete recovery.
We were the lucky ones to have received a quick diagnosis, which led to effective treatment
early on, preventing a myriad of other acute medical issues. We support the work the GBS/CIDP
Foundation does in order to help others get the quick, effective care we received. Henry’s aunt was
diagnosed with GBS about four years after Henry was. Unfortunately, her diagnosis has since been
changed to CIDP. Our entire family appreciates the dedication the GBS/CIDP Foundation has for
continued scientific research which will lead to faster diagnosis and better treatments for all GBS/CIDP
patients. Our family is grateful for your support of this fundraising event – from the bottom of our
hearts, thank you!
With much gratitude,
Heather and Henry Jackson