“I’ve never seen anything like it,” her daughter’s pediatrician said. Holly was at once shocked and frightened by what she heard. Testing was inconclusive, but a neurologist had a hunch…
When your trusted family doctor doesn’t know, anxiety can stop you in your tracks, or it can push you to action. For Holly, she sprang into action with all her energy.
Right before her eyes Holly could see that something – something the doctor couldn’t quite put his finger on – was rapidly overwhelming Hailey. “I really got scared when she couldn’t even open the car door,” Holly remembers. Hailey was in trouble.
Was it GBS? “We had never heard of Guillain-Barre Syndrome,” Holly remembers. “We couldn’t even pronounce it. And it was getting worse. The nurses had so much trouble inserting an IV and I was panicked that they wouldn’t be able to give her medicine.”
That was March. Hailey relapsed four times in the next six months. Finally, she was referred to a doctor in Denver, Colorado, two states and eight hours away. The whole family drove through the night, arriving at the hospital before it even opened.
“We made three trips to Denver that summer,” Holly recalled. She was angry and confused. “We met several doctors who suggested plasmapheresis, chemotherapy, steroids and IVIG. I was always upbeat in the hospital. I needed to be strong for Hailey. But then, I would go home in despair, and cry. I was rundown and emotionally paralyzed.”
Even though the doctors in Denver made the right diagnosis, CIDP, Hailey’s problems persisted. So, what next? It was Hailey’s grandmother who made the first contact with the GBS|CIDP Foundation. “After reading every word of every document the Foundation sent, I found mothers on the Forum who literally saved Hailey’s life and gave me hope. They had experience. They listened and shared. They already walked my path.”
In October, Hailey and her whole family traveled 13 hours to the Mayo Clinic in Rochester, Minnesota. “We were all so drained,” Holly tells us. The entire family felt the strain. “My heart broke again. Kolin, Hailey’s brother, just fell apart. He was so scared for his sister. He needed me, and I just didn’t have much left to give him. That was heart-breaking. Of course, I love them both, but Hailey was sick and needed me differently.”
At Mayo, Holly finally found a doctor who understood her anxiety and saw that she would make any sacrifice for her child. “You’re her mother,” she was told. “You see her every day. You understand her reaction and you know what’s best.” With those words and the support of the mothers on the Forum, Holly turned her anger and isolation into acceptance and resilience.
With the correct diagnosis, it was clear that Hailey needed regular IVIG infusions. With the infusion centers several hours away from their Montana home, Holly was determined to acquire the skills to administer the IVIG. “I kept turning back to the mothers on the Foundation Forum. They understood the range of regimens of treatment necessary to serve each child individually.”