This Saturday, a local family hopes to raise awareness about a terminal disease affecting one out of 100,000 births while raising money to go toward research for a cure. A walk, called the Every Step Walk, at Bonita Lakes Park begins with registration at 9 a.m. and costs $10 per person. The walk begins at 10 a.m. Funds from the walk will go to Hunter’s Hope, a foundation founded by former NFL All-Pro quarterback Jim Kelly after his son Hunter was diagnosed with the disease.

    Gemma Ward, whose mother, Tina, has organized the walk, was born Sept. 3, 2013.

    “We knew something wasn’t right with her,” Tina Ward said. “She cried all the time. She was hospitalized four times in six months.”

    Gemma was diagnosed with Krabbe Disease, also known as globoid cell leukodystrophy. It is a disorder that destroys the myelin, the protective coating of the nerve cells  in the brain and throughout the nervous system. It is one of 40  leukodystrophy diseases, all genetic and affecting the brain, spinal cord and nervous systems.

    Children who have the most aggressive form of the disease, Early Onset Infantile Krabbe Disease, can be treated with a cord blood transplant. Most children diagnosed with early onset Early Onset Infantile Krabbe Disease have a life expectancy of two years or less.

    Symptoms of the disease include extreme irritability, a loss of the ability to eat and swallow, nerve pain, stiffness and can even include seizures or blindness.

    The walk is being done in honor of Gemma and her friend, Karis Almy, who lives in Jackson.

    Almy was diagnosed with Krabbe Leukodystrophy and was given two years to live.

    “She has surpassed the doctor’s expectations and she is 5 now,” Ward said. “Her family is very optimistic that she is battling and winning. I don’t know exactly what their expectations are. The average life expectancy is two years, but they believe their daughter will be who she will be.”

    September is leukodystrophy awareness month, and though Krabbe is quite rare, other forms of the disease are more common, affecting anywhere between one in 2,000 to one in 7,000 people, according to Hunter’s Hope.

    Ward encourages parents of newborns to get screened for leukodystrophies. The screening is only required in two states, Missouri and New York, the latter due in large part of efforts by Kelly.

    “A newborn screening can change a child’s life,” Ward said.

    Registration can be done online at www.everystepwalk.org.