2016 – Arden Riley

In April of 2016, Seven month old Arden Riley was living out a normal happy life with her mom, Jocelyn and dad, Michael in Harlan, IA.  Arden was incredibly energetic, playful and social baby until early May when the unimaginable happened.  She became one of the youngest, and possibly the youngest patient ever documented with Guillain-Barre Syndrome (GBS).  Her mother, Jocelyn, describes the onset.

“She (Arden) was very lethargic, not interested in her toys or normal activities.  Tuesday morning we got her out of her crib and she was not moving and was not able to hold up her head. We went to the local Emergency room where they ran some blood work. Everything came back normal. The doctor transferred us to Children’s Hospital in Omaha Nebraska. Arden was growing increasingly lethargic as time went on. She was tested thoroughly for Botulism, Meningitis, and Guillain-Barre.  I immediately starting researching the symptoms of each possibility. Arden had every symptom of Guillain-Barre and was finally diagnosed on May 5th, 2016. The doctors at children’s had a hard time believing that Arden really had GBS because she had such a fast onset and she was so young.”

After undergoing immunoglobulin therapy Arden was finally able to open her eyes a little and move her head slightly.   She was diagnosed with the Miller-Fisher variant of GBS which is even rarer effecting only 1-5% of GBS sufferers.  She was given a feeding tube as it was not safe for her to eat due to paralysis.  On May 13th she was stable enough to move to Madonna Rehabilitation Hospital in Lincoln, NE.

In her time at Madonna, Arden received occupational, speech and physical therapy twice a day 6-7 days a week.  When she first arrived at Madonna, she was unable to hold her head up or completely open her eyes.  She has made great progress starting with movement in her facial muscles, core and even her grasp as of July 4th!

Jocelyn has this to say about the ordeal:

“This entire process was extremely scary and baffling. We just had such a hard time seeing her in pain.  She went from being a happy, active, healthy baby to being completely paralyzed and fighting for her life within 4 days. We are forever grateful to all of the doctors and therapists that helped and continue to help with Arden’s recovery. We are sharing this story to simply raise awareness of this rare syndrome because it can effect anyone and all ages.”