Pa. family copes with toddler's rare disease

January 16, 1997


Staff Writer, Waynesboro

WAYNESBORO, Pa. - Two-year-old Caleb Matthew Reely knows that something's not quite right with him.

Though he's as active as most children his age, Caleb's parents, Richard and Louise Reely of Five Forks Road, said their only son instinctively knows to regulate his play time so he doesn't get too tired. He will rest if he feels a lot of pain.

"He has his down times," Richard said.

What he doesn't know is that he may not live for more than six to nine years if his rare blood disease, known as Wiskott-Aldridge Syndrome, can't be treated.

"We realized right from the beginning that we knew we had to allow him to be a boy," Richard said. "We want him to enjoy his childhood as much as he can."


It took doctors in Chambersburg, Hershey and Pittsburgh a year to diagnose Caleb with the rare disease that afflicts only one out of every 250,000 males born in the nation, Richard said. The disease causes deficiency in the immune system.

During his first year, Louise said they knew something was wrong with their son because he would stretch his body out and scream. Though they tried everything to comfort their child, nothing worked, Louise said. It wasn't until Caleb began breaking out in rashes all over his body, which were later determined to be broken blood vessels, that doctors had their first clue to Caleb's condition.

"It was a relief to find out what it was. Not that he has it, but that we finally knew what we were dealing with," Richard said.

More bad news hit the family that week when Richard found out he would be laid off from his job as assistant manager at Ten Thousand Villages in Martinsburg, W.Va.

Louise also found out that week that she was expecting the couple's third child. Doctors had told the Reely's earlier that there's a greater chance for a second male to be born with the same disease.

"It just all came crashing down in one week," Richard said.

Though doctors say Caleb has a mild case of the disease at this point, without treatment it will get worse. The 2-year-old is already experiencing side effects from the disease including arthritis, inflammation of the esophagus, and digestive disorders. He is taking five different medicines just to combat the side effects.

Caleb's blood platelet counts are monitored by weekly visits to the doctor where the Reely's said Caleb automatically rolls up his sleeve for the nurse to draw blood. Platelets are a cell-like blood particle that helps with clotting. The toddler has already had a platelet transfusion.

The Reelys are careful not to expose Caleb to others who might have the flu, chicken pox or pneumonia since his immune system is too weak to fight the diseases.

Though there is no known cure for the disease, doctors have treated other cases with bone marrow transplants, chemotherapy and radiation, Richard said. It usually takes up to a year until doctors know for sure if the treatment worked, he said.

Caleb's name is on a national bone marrow recipient list but there's only a 30 percent chance of finding a "perfect match" out of 2 million donors, Louise said. The family has been tested for a possible match, including 4-year-old sister Renee and baby sister, Emerald, born 15 weeks ago, but all turned up negative.

The Reelys were told that doctors could proceed with the treatment if they found a "close match," Louise said.

Friends of the family plan to hold a bone marrow drive soon, Richard said. The drive wouldn't be held to find a match specifically for Caleb, Richard explained. It would provide the opportunity for the public to be put on the donor list for potential matches to those in need around the country, he said.

For now it's a waiting game. Louise continues to work part-time as a waitress and Richard said he has applied to work part-time as a janitor at Five Forks Brethren in Christ Church, where they are members. The church has set up a Caleb Reely fund to help the family with expenses. Treatment will be covered by insurance up until September of this year, Richard said.

"The fund raising is meant to help us recover from what we've already had to spend on testing and prescriptions," Richard said.

Donations can be sent to the Five Forks Brethren in Christ Church, c/o The Caleb Reely Fund, 9244 Five Forks Rd., Waynesboro, Pa. 17268.

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