Have you ever met a real life superhero? I mean someone that selflessly puts their own life in peril to help others? Fort Worth natives Steven and Katherine “Kathy” Grube’s daughter Chrissy Grube was a superhero who walked among us. Kathy Alvey Grube graduated from Haltom High School in 1996.
Chrissy passed away February 13, 2016 at the tender young age of 10, but she touched many lives in those few short years. Chrissy was an average child growing up. She loved unicorns and Pokemon and video games and Shopkins and princesses and fairies and anything pink and soft. When Chrissy was four years old, her mother noticed she was having difficulty walking. After extensive testing, Chrissy was diagnosed with Giant Axonal Neuropathy (GAN) -- a recessively inherited condition with a bleak prognosis.
GAN generally appears in early childhood and progresses slowly as neuronal injury becomes more severe. As the disorder progresses, patients become quadriplegics, dependent on a feeding tube and ventilator before dying, typically in their second or third decade.
Despite physical therapy and all available treatments, Chrissy gradually lost feeling in her legs and was confined to a wheelchair by age 8. But that didn’t stop her from wanting to do all the things kids her age were doing. She always maintained a positive attitude and was typically thinking more about others around her rather than her own comfort.
In 2012, the Grubes moved to the Baltimore area for access to the best doctors and treatment options for Chrissy. During that time, Chrissy made many friends at her school, Ronald McNair Elementary. She charmed everyone she met, especially her teachers.
In 2015, Chrissy was accepted as the first patient in the GAN gene therapy clinical trial, funded by Hannah’s Hope Fund for Giant Axonal Neuropathy, Inc.
The treatment approach developed at the University of North Carolina Gene Therapy Center, uses a genetically modified virus to deliver the missing GAN gene into the cerebrospinal fluid of children with GAN. The trial is the first in history to deliver gene therapy through the spinal fluid to test the potential to achieve broad treatment of the spinal cord and brain.
Chrissy knew the risks associated with the trial, but she wanted to help other kids battling GAN, including her six-year-old sister Amanda.
After the treatment, she spent two weeks in recovery at the National Institute for Health. Very soon, Chrissy saw great improvement. She was starting to get feeling back in her legs. Each time she went back for follow up testing, she was showing more and more gains. Doctors were hopeful that Chrissy might walk again. But she would require surgery to correct severe scoliosis in her spine, a result of years confined to a wheelchair.
The Friday before surgery, her classmates and teachers threw her a party. They gave her drawings of her favorite Shopkins and Pokemon characters, and wrote letters to her. She read each letter that night before bed.
She checked in at Johns Hopkins for the surgery on February 9th. Chrissy was recovering well and two days later was moved to the pediatric floor. But in the early morning hours of February 12, she suffered cardiac arrest. She was revived, but suffered another fatal heart attack an hour later. She remained on life support until the morning of February 13, when she was called home to heaven. She passed peacefully, surrounded by her family.
Chrissy will return home for a 1 p.m. service February 24 at First Baptist Church in Euless. She will be laid to rest at Greenwood Cemetery in Fort Worth.
Christine “Chrissy” Grube is survived by her father Steven Grube, mother Katherine Grube, sister Amanda Grube, grandparents Steve and Patsy Grube and Anita Alvey, great-grandmother Frances Alvey, a large extended family and countless friends.
Meanwhile, the quest to find a cure for GAN continues. Because the condition is so rare, there is no government funding available. Hannah’s Hope Fund is a 501(c)(3) public charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.
For more information about GAN or to make a donation, visit www.hannahshopefund.org.