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Lee, 7, and Hudson, 5, of Lancaster, both suffer from neurofibromatosis type 1, a rare genetic disease. Symptoms include spots on the skin, called café-au-lait spots due to their light-brown color; neurofibromas, or small tumoral lumps just under the skin; and skeletal abnormalities such as bowing of limb bones. The disease can produce cancers of the central nervous system, most frequently optic glioma, or tumors on the optic nerve.
In both young boys, the condition has progressed to the cancer stage.
On Sunday, the brothers will travel to Blue Bell to take part in a bicycle race at Montgomery County Community College called the LiveStrong Challenge. It is sponsored by the Lance Armstrong Foundation, an anti-cancer charity founded by the Tour de France race winner and cancer survivor.
A mix of running and bicycling events will be held to raise money for the fight against cancer. The boys will ride in a five-mile race and will get to meet Lance Armstrong.
"They were looking for kids who were in remission or weren't undergoing treatment at the time," their mother, Jennifer Kettering, said.
The genetic defect responsible for the disease was inherited from their father, Kettering's ex-husband.
In Lee, the disease showed up immediately.
"When Lee was born we knew he had it because his leg was bowed," Kettering said. The tibia in the lower leg is the bone most commonly affected by the disease.Lee saw his first orthopedic doctor at age seven days. Since then he has had two bone-graft surgeries and faces still more.
At age 13 months, the first brain tumor showed up behind both his eyes, and the boy began chemotherapy.
During this time, Kettering was pregnant with Hudson. The chances of developing neurofibromatosis is about one in 3,000, so doctors and friends told Kettering not to worry. There was little chance her second child would have the same disease.
"They thought I was paranoid and that I should concentrate on Lee," Kettering said.
At first, it appeared everyone was right.
Then at age 16 months, the cafe-au-lait spots showed up, as did a tumor extending into both optic nerves.
"It goes from right behind the eyeball, to the bridge of the eye which goes up into the brain," Kettering said.
Hudson, too, began chemotherapy.
(432) (156) (78) (72) (32) (25) (24) (7) (6) (5) (3)At age 3, a tumor cluster was found at the base of Hudson's brain and another in the middle of his brain. That one grew 15 millimeters in six months.
"And in the brain of a 3-year-old, that's huge," Kettering said.
The boys received regular treatment at The Children's Hospital of Philadelphia.
As of now, neither boy is receiving chemotherapy. Hudson, Kettering said, is "doing pretty well," while the prognosis for Lee is less promising. He has a tumor on his brain stem that will eventually — no one knows when — cause him to lose all function on one side of his body.
"As he grows up, that will end up happening," Kettering said. "But he's just awesome now."
Kettering has been helped greatly by her boyfriend, Neil Cromwell, who helps take the boys to their doctors, and by her daughter, Sadie, 12, who "is there for her brothers."
Sadie has a different father and does not suffer from the same ailment as her siblings.
The boys have seen a lot of doctors and hospitals, and the treatments, including surgeries and MRI scans, have been "very costly," Kettering said. Despite insurance, she said, Kettering is "$85,000 in the hole."
"You do what you can," she said. "I've made deals with people. I've borrowed money from family and friends. You don't know what to do. And the boys can't understand when they say, 'Why can't you buy me this,' and I say, 'When Mommy has the money, she will.' "
Despite their problems, the boys seem happy and are full of energy. Lee will enter first grade at Brecht Elementary this term, and Hudson will start kindergarten.
"Their spirit just can't be broken," Kettering said "Even when they were going through chemo. Nothing keeps these kids down."
Her main concern is for them not to feel different from other kids.
"The only thing I wish for both of these kids is that they grow up knowing that they're no different than anybody else," she said. "They need to be encouraged, and that's why I'm here."
Right now, their enthusiasm is focused on the bike race.
"I'm going to go really fast," Hudson said.
Lee said the event will be "very fun," and he hopes to challenge Armstrong.
"I want to race him," Lee said.
Asked who will win, Lee said he will.
With that kind of courage, he might be right.
E-mail: lalexander@lnpnews.com
