Derek Parker, a miner struggling with the financial burdens of Blackjewel’s bankruptcy, and his wife Sara, seek to raise awareness for their baby. Stryker, who is almost five months old, was diagnosed with Wolman Disease – a fatal rare disorder — around the first of September.

Wolman Disease is a congenital disease characterized by an impaired metabolism of the fats (lipids) and is the most severe type of lysosomal acid lipase deficiency (LAL-D). The deficiency causes a buildup of fats in body organs and calcium deposits in the adrenal glands.

Parker said there have only been 50 reported cases of Wolman Disease, with Stryker making 51.

“When my wife was pregnant, doctors told us her belly was measuring like she was 40 weeks when she was just 37 weeks,” Parker said. “Then when Stryker was born, they told us he was just a fat baby so we took him home.”

Parker said a few days later, Stryker still had not had a bowel movement. It was later discovered through an ultrasound in Lexington that Stryker’s liver and spleen were enlarged, one of the many common symptoms babies with Wolman Disease have, including jaundice, poor weight gain, low muscle tone, vomiting and more, according to the Genetic and Rare Diseases Information Center.

“So we went from Lexington to Cincinnati where doctors started tests that led up to a liver biopsy,” Parker said. “With that, they confirmed it was Wolman Disease.”

Doctors explained their findings to Stryker’s parents, telling them babies with the disease normally have a short life expectancy depending on the type they have.

In a phone call to the family, a doctor told Parker, “We’ll have more answers later and see how we can fix this. We at least know what we’re up against and we can figure this out.”

Parker said the doctor told him out of the cases that were reported, children have been known to live until early childhood but ultimately die of organ failure.

After the discovery, doctors began treating Stryker with Kanuma, a treatment which replaces the LAL enzyme through infusions and then works to restore lysosomal metabolism.

Parker said his son will receive the infusions every Monday for the rest of his life, adding “they poke him six times a day and it’s hard on him.”

“They can’t find veins anymore, so they’re going to do a port. We meet with the surgeons on Monday.”

Parker explained the port will be placed into Stryker’s neck so when it’s time for his infusions, the IV can be inserted into the port to allow the fluids to run directly into his artery.

“You get so mad because he hasn’t done anything. I believe in God, but I don’t understand how he could take such a happy baby,” Parker said, mentioning how Stryker is always smiling.

“So many people lose their babies because of SIDS (sudden infant death syndrome) but this could be one of the reasons why.”

Parker said his family doesn’t want to be alone during this time because “it’s hard enough going up there together. Eventually, I’ll have to go back to work and Sara will have to go alone.”

Parker added although he and his family are “emotionally drained,” they aren’t asking for handouts.

“People around here have helped with finances, but we don’t ask. I have my retirement to use, but’s that’s what was paying our bills. Now with this, everything is running out and we still have kids to take care of down here too.”

The Parker family wishes to raise awareness of the rare disease, hoping one day a cure may be found.

“This is no life for a child to be in a car and then a hospital every day,” Parker said.

A Go-Fund-Me has been set up to help relieve financial strain and transportation for Stryker’s treatments. You can visit www.gofundme.com and search “Baby Stryker” to view the campaigns progress or lend a helping hand.

For more information regarding Wolman Disease, go to www.rarediseases.org/rare-diseases/wolman-disease.