Tremont resident copes with rare disease

By Whitney Palmer/Special to The Times

“He started hurting back in March,” said Tremont’s Lori Harnage, talking about her son, Devin. “We went to the doctor, but they treated him for a pulled muscle and sent him home.”

When he wasn’t getting any better, Harnage said that they took Devin to the emergency room with shortness of breath and pain on the 20th of September. The doctors performed a few x-rays, but sent him home again.

He went back to the ER with the same symptoms just a few days later. The doctors were going to send him home for the third time, but Harnage said they convinced the doctors to do a CT scan, which showed that he had fluid in his lungs and was missing one rib and a portion of another. Devin was admitted to the hospital on Sept. 26 where they did a biopsy on three ribs and put in a chest tube.

It wasn’t long until The Mayo Clinic diagnosed him with Gorham’s disease. Gorham’s disease, also known as Massive Osteolysis, is an extremely rare disease that causes the bones to deteriorate. There are fewer than 200 known cases in the world, with only about 20 in the United States. The cause of Gorham’s is unknown.

Devin’s treatment includes a daily injection of Intron A. There are an abundance of blood vessels bleeding out, causing fluid to fill in his chest cavity. The Intron A will help kill off some of the blood vessels and slow down the drainage.

Devin recently got a tube put in his side that allows him to drain the fluids himself in the comfort of his own home.

“He doesn’t have to be stuck every week because that really was painful,” Harnage said.

Along with the Intron A, Devin goes to the children’s hospital in Birmingham every Monday for blood work and tests. Every four weeks he gets an infusion, or an IV drip, of Zoledronate, which is a type of radiation. Although the radiation will cause him to lose his appetite, to become tired more quickly and his hair to thin, it will help stop the bones from deteriorating.

“We really don’t think it’s going to go further than where it is. They think that it’s probably going to be contained right there,” Harnage said.

To help with medical expenses, there will be a benefit for Harnage on Saturday, Feb. 11, at Salem Baptist Church. The benefit will kick off at 4 p.m. beginning with a gospel singing, followed by an auction beginning at 6:30 p.m. There will be chicken and BBQ plates for sale, chances on a 5×8 trailer and a 6×10 trailer, T-shirts and bracelets for sale and a cake walk.

When asked how he’s coping with his rare disease, Devin said he is “just taking it one day at a time.”

So far, there hasn’t been any improvement. Harnage’s blood work does show different things steadily going down, but nothing so dangerous that he would need further treatments.

“Anyone who has ever heard about it is interested in learning more about it. We really haven’t talked to anyone who has ever had it,” Harnage said.

For more information on the fundraiser, contact Dana McKee, 662-891-6655; Amber Harnage, 662-279-2150; Karen Ladewig, 662-213-9536 or Trelvie Petty, 662-231-3441.

Whitney Palmer is a senior student at Tremont High School.