Peoria family suffers from a rare disease

PEORIA — Molly Jackson doesn't seem that different from a typical mother in the Peoria area: she shuttles her four daughters to and fro and runs the house. The already tasking title of motherhood is made more difficult by a blight on two of her daughters so rare that there's only been 300 recorded cases in the world.

Two of Molly and Justin Jackson's daughters suffer from what can only be described as a hyper-fever. It inflicts the bookends of the Jackson's four daughters: Victoria, 22, and Priscilla, 8.

“We usually call it Hyper-IgD,” Molly said. “When I found out Priscilla had the same thing as Victoria, I bawled.”

The technical term for the disease is hyperimmunoglobulinemia D and periodic fever syndrome (HIDS) and it was first described in 1984. In terms of diseases, it's relatively young and relatively little is known when it comes to finding a cure.

The Jacksons also have two other daughters, Brittaney and Stephanie who don't suffer from the rare condition. Brittaney does share something else with her inflicted sisters: juvenile arthritis.

When it comes to medical conditions, it's quite the opposite of HIDS since it affects roughly one out of every 1,000 children a year.

It being common is no consolation for the Jackson family. The two diseases deliver a medical one-two punch that makes an already difficult life that much harder.

“The relationship between the two, the chances of having the arthritis with the HIDS is very slim,” Molly said. “They don't go hand-in-hand.”

With HIDS and arthritis combined, Victoria and Priscilla have a nasty combination of symptoms.

“Terrible fevers. They shake, terribly. They have some swollen glands. Terrible chills too,” Molly said. “One minute, Priscilla was absolutely normal. Two hours later she jumped to a fever of 105.”

These episodes are random and not easily predictable. They can last for a week and come back a week later.

This random brutality of HIDS mixed with juvenile arthritis makes life unpredictably hurtful. This makes Victoria's progress with the disease all the more impressive.

According to Molly, Victoria is the sickest of the Jackson family. Seemingly, it has slowed her down very little. She's now a junior in college studying public relations.

“We never expected her to graduate in four years,” Molly said. “We're amazed she's a junior. She just pushes herself.”

During and between flare ups, Molly has to drive her daughters to their doctors visits, be it in Peoria, St. Louis or Cincinnati. This kind of hectic lifestyle is not limited to just Molly and her daughters with the medical conditions.

The countless trips the family takes adds up, though. Every doctor visit, every new drug, every out-of-state trip racks up serious costs. The care Molly has to give her daughters on a daily basis is a necessary and unheralded full-time job, but obviously it does not pay.

“We are lucky to have health insurance through Justin because if we didn't we wouldn't be able to leave and go to where we have,” Molly said “But you still have your deductibles. You still have that 20 percent co-pay.”

The costs are not going down anytime soon, either. The next trip for the family will take them all the way to Baltimore: Johns Hopkins Hospital.

“We're hoping to be part of a study,” Molly said. “We're hoping that we see all the genetic doctors.”

That means more money for another trip, though.

When their church, Holy Family Catholic Church, learned of the trip, they took action.

“We've been at Holy Family since Victoria was in first grade,” Molly said. “When the men's club said they were having a benefit, when Justin told me, I cried.

“We're really excited,” Brittaney said.

The benefit has definitely spawned a new ray of hope for the family, but positivity is never too far away from the Jacksons. If through all of this, Molly is able to find some positivity.

“Someone asked me, how do I do it? They ask me do I question my faith. I say sure, who doesn't,” Molly said. “Maybe God has a plan for us. Maybe because of us, someone in the future doesn't have to suffer.”

Only because of each other are Victoria and Priscilla Jackson able to get through their conditions in a perfect example of the bonds between sisters.

Stephanie, the one daughter who is not afflicted with anything, plays a very vital role in the family: cheerleader.

Even when it comes to trips outside of the state, Stephanie is usually in tow cheering along.

“When Priscilla is sick, I'll lay on the couch with her,” Stephanie said. “With Victoria in the hospital, I'll stay in the hospital with her.”

Stephanie's bedside manner has evolved with age. Today, she has become her oldest sister's confidant.

“As my sisters have gotten older, they understand more,” Victoria said. “Stephanie is definitely the one I can talk to the most.”

Brittaney to this day suffers only from the juvenile arthritis, but she still feels the draining symptoms the condition has on her.

“Sometimes at recess it means not being able to keep up,” Brittaney said. “But I can just take a Motrin and lay in bed.”

Priscilla isn't quite as lucky. HIDS restricts her life in ways that seem cruel for an eight-year-old. Priscilla once had a flare up the night before a soccer match, which meant she was not able to play in the morning.

“Doesn't this disease know I have soccer in the morning,” Priscilla said.

Fate smiled down on Priscilla recently. This summer, she went almost a full two months without a single flare up.

“This summer? Basketball. Fun,” Priscilla said. “I love basketball.”

“She was active,” Molly, their mother, said. “She played a lot and had fun.”

Basketball is a passion both Priscilla and Brittaney share. Their love for the game keeps them active and energized. For the conditions they have, it's the best thing they can do.

“They look healthy. They play sports,” Molly said. “The more active they are, the better it is. They say it's something to do with endorphins.”

Throughout all of this and all their conditions, they look like a perfectly happy and healthy squad of sisters. Maybe a bit too healthy.

“We get the comments all the time that you don't look sick,” Molly said. “Well, do you want us to get sick?