Two-year-old Lucas Cummings of Harrisonville has a rare disease that most doctors in Kansas City have not ever seen before.
“The first thing I remember was that he had a little tiny blister right in the middle of his chest,” said Lucas’ father, Heath Cummings. “We were swaddling him every night and we thought he had gotten too hot in the swaddle. We thought it was a heat rash, or something.”
Only four months old, the blisters kept coming back and getting worse.
“It was pretty much just on his trunk area at first,” Heath Cummings said. “We finally took him to a dermatologist and they had no idea. They were completely stumped and sent us to Children’s Mercy. They thought it was Mastocytosis but nobody there had seen it before.”
Blood tests later confirmed the disease.
Mastocytosis is a rare disorder characterized by an abnormal accumulation of mast cells. There is no known cause or cure for the disease. The symptoms are unpredictable and can be life-threatening.
In March 2010, Lucas spent four days in the burn unit at Children’s Mercy Hospital in Kansas City after blood blisters had covered 80 percent of his body.
“You would pick him up and his skin would almost fall off in your hands,” Heath Cummings said.
Doctors mummified Lucas’ body during his stay to help heal the sores, and were also to reevaluate the medicine he had been prescribed.
“They looked much more closely at his medication when we were in there and tried a few things,” said Sarah Cummings, Lucas’ mom. “There’s a lot of little things in normal, over-the-counter medicine that he can’t take, and that’s what they think might have triggered it.”
Now doctors have Lucas on a variety of medications that help him live as close to normal as possible. Outbreaks still occur, but usually only when he exerts himself, especially in the heat, or too much emotional excitement.
Big brother and sister, Heath Jr., 10, and Kaitlyn, 12, also have to be careful when playing around the house with their active 2-year-old brother.
“He’s really not good with heat, at all,” Heath Cummings said. “You have to be really careful rough-housing with him. Basically, he gets the hives no matter what, but if the hives are rubbed, bumped or brushed, they turn into blisters.”
It is also a difficult job for mom.
“It’s a tough balance in keeping him from getting too upset and making sure he’s a good kid,” Sarah Cummings said. “We don’t want to spoil him too much, but we don’t like it when he gets too worked up.”
But thankfully, his parents are happy the disease is not nearly as bad as it was a year and a half ago.
“There’s a 50 percent chance that he’ll grow out of it, and that’s what we pray for,” Heath Cummings said. “It may be tough going to school (with the blisters) because you know how elementary school kids are.”
Lucas will turn 3 years old Aug. 31, and within the last four months, his parents have began talking to him about Mastocytosis because he has been able to start realizing something is going on in his body before an outbreak occurs.
The Cummings are hosting a golf tournament and silent auction Saturday, Aug. 4, to raise money for research and Lucas’ medical expenses.
The event is being held at Country Creek Golf Club’s Hoot’s Hollow in Pleasant Hill. Registration for the 18-hole golf tournament begins at 8 a.m. and the silent auction will end at noon. Four-member team registration is $300.
The medicine alone costs about $600 a month, and last year’s event raised $5,300.
Family friends, who are a part of the “therest,” a new local Christian band, are also planning a benefit concert at Harrisonville Park Saturday, Aug. 18.
The concert will be held at 7 p.m. in the amphitheater. There will be a raffle, and all profits from the band’s merchandise table will go to the Cummings, along with any donations received.
Through these events, the Cummings hope to explain to their community a little more about Mastocytosis.
“You can’t really explain Mastocytosis in a grocery store conversation, and you don’t really want to talk about it then,” Heath Cummings said. “But you do get a lot of weird looks.”