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Fighting Hard To Live

Kathy Waters/Highlands Today

Christine Merrick reads to her daughter, Bryona, 3, on Saturday at their home in Sebring. "She loves to read anywhere and everywhere," said Merrick who spends as much time as she can with her daughter. Merrick, 25, has two rare diseases and a life expectancy of 2-4 years.

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By DOUG CARMAN

Highlands Today

Published: September 2, 2008

SEBRING - Christine Merrick's life turned upside-down and nearly slipped away from her last year.

One day the single mother found herself feeling sluggish, and she went to see her doctor. The doctor found out she was anemic. She looked really pale and the doctor suggested she go to the hospital immediately.

She made it to the hospital but passed out. She had "flat-lined" and had to be resuscitated.

Doctors bought her some time that day but the 25-year-old may not live to enjoy her 27th birthday.

She was diagnosed with Wegener's granulomatosis, a rare autoimmune disease that causes blood to gather in her lungs. She also has pulmonary hemosiderosis, which causes her lungs to bleed. When she lost her heartbeat, she only had four pints of blood in her body and needed a blood transfusion to stay alive.

According to the National Institutes of Health and the Cleveland (Ohio) Clinic, Wegener's can cause the kidneys, lungs, and sometimes several other organs to fail without treatment, killing the person afflicted with the disease in a few months. With chemotherapy, steroids and other treatments, more than 75 percent of patients can survive for at least eight years.

Information is not widely available for the latter disease, which causes one's lungs to hemorrhage. It usually appears in children and they rarely live for more than three years even with treatment. It is not known if Wegener's and pulmonary hemosiderosis are related to each other.

Doctors have told her she may have another year left to live. She suspects the disease started after she gave birth to her daughter Bryona. She planned to have her mother take care of her daughter since her ex-husband leaves the city for work at 4:30 a.m. every day. She already bought her own burial plot and is preparing to buy a casket and tombstone.

"I thought about everything," she said.

As she discussed her burial plot, her voice cracked. "It's a little morbid, but I just don't want my family to pay for it," she said, as she sat on her couch, wiping the tears from her eyes.

Since her diagnosis, she kept getting seriously ill when she tried to work, and she said her doctors told her she shouldn't hold a job.

So, "she cleans her house, cooks and spends as much time as she can with her daughter," said Martin Sodrel, Merrick's father-in-law. "Other than that, she's been really consumed with this illness."

Treatment has been hard for her to find. Merrick and Sodrel said she tried looking at hospitals everywhere in Florida and as far as Houston, running up her phone bill for a doctor that Merrick thought would know more about her rare, lethal condition.

Instead, she ran into roadblocks. The Social Security Administration rejected her disability claims, and the hospitals she reached wouldn't take Medicaid.
Merrick said she even offered herself to the hospitals as a test study for them to learn more about the two diseases and possibly come up with a cure. She said the hospitals still wouldn't take her.

"The only thing they'll help with is a kidney transplant, that sort of stuff," Merrick said.

At Gainsville-based Shands Hospital, for instance.

"They would tell her they'd do something for her, but she lives in the wrong zip code," Sodrel said. "It doesn't seem like anyone is interested in knowing there's something out there that could really whoop us."

Christine Merrick and Sodrel are more worried about Bryona, not only because Merrick said she wants to make sure Bryona can be reared by her grandparents if Christine dies.

"I'm in the process of getting my daughter tested," she said. She saw a few symptoms from her daughter suggesting she could have pulmonary hemosiderosis as well.

"I don't know if I'm overlooking things because of my own signs... or if my mind is playing games on me."

Doug Carman can be reached at 386-5838 or dcarman@highlandstoday.com

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