‘Together Everyone Achieves Miracles’ – Community Joins Together to Help Carson McCall in His Battle Against Krabbe Disease

By April Hall, Staff Writer

RED OAK – On June 23, 2016, three-year-old Carson McCall of Red Oak was diagnosed with Globoid Cell Leukodystrophy, commonly known as Krabbe Disease.

Krabbe Disease is a genetic disorder that affects the central and peripheral nervous systems. Those affected by Krabbe typically appear healthy until onset, or when an individual experiences symptoms of the disease. Onset can vary from the first few weeks or months of life (Early Infantile Onset) into adulthood (Adult Onset). Those who suffer from Krabbe Disease have a deficiency of an important enzyme called Galactosylceramidase (GALC). Krabbe Disease is both a Leukodystrophy and Lysosomal Storage Disorder (LSD). Leukodystrophies are characterized as degenerative diseases of the white matter of the brain. LSDs occur when a part of the cell, called the lysosome, does not function properly. In a healthy individual, enzymes break down material in the lysosomes, however, if the body does not produce enough of a specific enzyme (ex: GALC), material builds up and becomes toxic.

Although there is no cure for Krabbe Disease, Carson has been enduring extensive procedures and receiving testing at Duke University Medical Center in Durham, N.C., to determine the best method of treatment to slow the progression of the disease.

Since his diagnosis, Carson and his family, parents Teri and Jarrod McCall, and brothers, Clayton and Colton, along with their extended family, have received an outpouring of love and support from the local community. “We cannot begin to describe how much we appreciate the outpouring of support the community has shown to us since Carson’s diagnosis,” said Teri McCall. “This community deserves so much praise, and we thank them from the bottom of our hearts for the love they have shown and continue to show us.”

In addition to the many prayers, visits, phone calls, cards and other acts of kindness, several community members have hosted fundraisers with all proceeds benefitting the family as they and Carson prepare to begin his treatments at Duke.

Additional fundraisers have been planned to help support the family, including a Boston Butt Fundraiser on Saturday, August 13 at Mecklenburg Electric Cooperative in Chase City. Boston butts are preorders only and can be purchased by mailing your check by August 5, to Heather McKinney, 583 Rutledge Road, Red Oak, VA  23964. The cost of the butts is $30 each and will be ready for pickup by 12 p.m. There will also be a “Cruz’n for Carson McCall” on Saturday, August 27 at the Wylliesburg Diner, located at 2300 Barnesville Highway, Wylliesburg. The event starts at 10 a.m. and lunch will be ready at 12 p.m.; plates are $12 each. There will be a cruise-in, raffles, a bounce house, games and vendors on site.

Care packages for Carson can be mailed to: Carson McCall, 643 Barnes Road, Red Oak, VA  23964. Some of his favorite things are Minions, Lion Gard, Paw Patrol, Bubble Guppies, Ninja Turtles and the color orange. Carson loves receiving cards!

As long as Carson stays healthy (healthy meaning no sickness), he will be admitted July 25 for placement of his central line and chemo will begin at midnight. He will have eight days of chemo to wipe out his immune system so the new cells have the best chance at engrafting. There will be a day of “rest” and his stem-cell transplant will take place August 4. If all goes well, Carson will remain in the transplant unit of Duke for a minimum of six weeks. After being released, he has to remain within a 10-minute drive from the hospital, so he will be staying at the Ronald McDonald House for a minimum of four months.

For more information on additional fundraisers and to follow updates on Carson’s battle with Krabbe Disease, please visit the Team Carson Facebook page.

“We want to help spread awareness of Krabbe Disease,” stated McCall. “Its testing needs to be added to newborn screening to save families from having to go through what we are facing.”

To learn more about Krabbe Disease visit huntershope.org.