A Rare Illness Has Led To One Young Boy’s Mission For Awareness
It’s a little-known illness with tragic consequences: Krabbe Disease, a rare genetic disorder that leads to the degeneration of white matter in the brain. If detected before symptoms develop, it’s possible to treat Krabbe Disease through stem cell transplants. Once symptoms arise, however, the disease’s progression is unstoppable, and will kill children within an average of two years. While infants get screened for a host of disorders at birth, Krabbe Disease is not included in the state of Texas’s roster of screened illnesses. The Jackson Project, a Fort Worth non-profit founded in honor of Krabbe-fighter Jackson Wallace, seeks to change all that.
“So much depends on early detection,” says Michael Wallace, Jackson’s father. “We were first-time parents when we went through the process. Newborn screening wasn’t a topic that really came up, and we didn’t even know this condition was out there.”
Michael and his wife, Jenna, submitted to the standard range of newborn screenings. With no problems detected, the first-time parents welcomed young Jackson into what was assumed a healthy and happy life.
“Jackson was a thriving baby boy for the first five months of his life,” says Michael. “At around the five month mark, we noticed he was growing more and more fussy and uncomfortable.”
The disease’s symptoms begin innocently enough: rigidness and general discomfort that can be attributable to any number of childhood afflictions. Initial doctor visits led to uncertain diagnoses, and it wasn’t until an emergency-room MRI that Michael and Jenna discovered the truth.
“If the disease is not caught through screening, it becomes really challenging to identify it in time to get beneficial treatment,” says Michael. “The ideal situation would be to screen for Krabbe uniformly across all 50 states.”
Progression is rapid once the disease takes hold. A form of leukodystrophy, Krabbe Disease affects the nervous system and leads to a general loss of cognitive and physical abilities. Myelin, the sheathing that coats nerve cells, becomes gradually broken down, a scenario that can lead to anything from hearing loss to seizures. The most common form of Krabbe Disease affects newborns, which makes infantile screening all the more important.
“With screening, bone marrow transplants become available as treatment for pre-symptomatic cases.” says Michael. “We’ve met transplant recipients who are completely healthy and show no signs of the disease.”
Texas’s non-inclusion of Krabbe Disease screening meant that Jackson’s illness went undetected. Since Krabbe Disease becomes quickly untreatable, Jackson’s parents now focus on the child’s comfort.
“We’ve seen the disease take root and have a huge impact on him,” says Michael. “We’ve seen him progress through several stages of the disease process. Overall he’s good, but compared to a healthy child, we’ve seen a dramatic effect.”
The Jackson Project exists to raise awareness of this disease and encourage screening at a general level. In addition to raising awareness, the Jackson Project also supports afflicted families and provides assistance for those with financial need.
“The bulk of our allocation is to family support,” says Michael. “A lot of the awareness we raise comes through volunteer effort. We have aspirations to grow the organization and continue to increase our ability to contribute to research efforts towards a cure.”
As for Jackson’s involvement, he’s lent not just his name, but also a nickname to the organization’s efforts. The Jackson Project’s logo, a stylized bird, was derived thanks to its namesake.
“We’ve called Jackson by the nickname J-Bird from the time he was about two weeks old,” says Michael. “It was a random scenario that caused it, but the nickname stuck.”
For those who want to support the Jackson Project, the 501(c)(3) charity accepts donations online at TheJacksonProject.org.