The day 12-year-old Cassie Sontag got sick, she may have saved the life of her 17-year-old sister, Brittany. And vice versa.

A student at Inola High School, Brittany Sontag has learned the value of faith, family, and friends. Her incredible journey began September 2003, when she hovered near death.

“Dr. K[irpatrick] doesn't pull any punches," said mother, Kathy Sontag. "He never has.”

One of a team of specialists that worked on Brittany and continues to monitor her care, the doctor warned Kathy that her daughter's chances for survival were slim.

School was starting and Brittany slept all the time, couldn't eat or when she did, couldn't keep food down. Doctors first told her she had a virus, but her body was telling her what she couldn't explain, that this was something far worse. She was anemic and lost so much weight, doctors next thought she might be anorexic. Eventually diagnosed with mono, Brittany declined quickly.

On Aug. 30, 2003, the family was at the Claremore Recreation Center celebrating Cassie's birthday. Brittany couldn't breathe. They took her to Claremore Indian Hospital where she was sent to the emergency room for tests. Her liver and spleen were enlarged. She was transported to St. Francis Hospital on Sept. 1, 2003.

Doctors put Brittany into a drug-induced coma. Her blood oxygen was close to 40, and she was dangerously near death.

"They put her into a coma to stabilize her," said Kathy. "They didn't expect her to live."

Rounds of testing eliminated the most obvious diseases. Eventually they went to the less obvious, and Brittany was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a rare disease affecting one person in 200,000.

During her time in the hospital, Brittany's spleen ruptured. She must now take penicillin twice daily and will have to remain on antibiotics the rest of her life due to the loss of her spleen. She endured a year of chemo and medication to restore her health.

Despite her illness, Brittany stays upbeat.

"I noticed how many people care. You have to keep a positive attitude and have faith in God," she said. "It makes it easier to fight this disease."

As long as doctors keep her informed, Brittany doesn't mind cooperating with treatments.

"I've never been afraid," she said.

During her treatment, homebound teaching kept her from losing a grade in school, but Brittany was anxious to get back to church.

"The first thing she said when she started getting better in the hospital was 'I want to go to church,'" remembered Kathy.

"Brittany is a youth leader," said Judy Conwell, Brittany's youth director at Inola United Methodist Church. "She absolutely has the best attitude I've ever been around in my life."

Brittany's younger sister, Cassie, took ill September of this year. She had been sick for a week. Her doctor thought she had a stomach bug, and she stayed home from school, sleeping a lot, running a high fever, and throwing up.

"Mom, she's got what I have. This is exactly how I was," Brittany worried. But the odds were against it. Even though one form of the disease has a genetic link, the likelihood of siblings contracting it is so rare that no one else suspected it could be the same illness.

"I believed them at first (that it was a stomach bug)," said Cassie. But she wanted to go back to the doctor. She knew what the flu felt like, and that this was much worse.

On Sept. 12, 2006, Cassie found herself in the same room and the same bed sister Brittany had occupied three years earlier. This time, Kathy had put her foot down and insisted Cassie be transferred to St. Francis and tested for HLH.

The test came back positive. Cassie is undergoing treatment, an updated protocol. Brittany's experience with the disease means Cassie's illness was caught earlier. With Brittany by her side to support her, Cassie's journey has been a little bit easier than her sister's had been.

HLH takes different forms. Genetic testing would have confirmed what was now obvious, that Brittany and Cassie have the familial form, not the cancerous version, but insurance would not pay for the testing at the time of Brittany's diagnosis. Cassie's illness told them that Brittany is not cured.

"The doctor said this form will come back with a vengeance, and it will be worse," said Kathy. "It can't get worse. Brittany almost died. She has no spleen."

Kathy does not understand why insurance companies are not more cooperative on the preventative end. Testing siblings and avoiding Cassie's hospitalization would have saved money in the long run. Due to Cassie's illness, sisters, Ashley, age 21, and Deidre, age 13, will be tested for the disease.

Now, it's a wait-and-see game. Both Brittany and Cassie need bone marrow transplants to ensure long-term survival. The family has gone through blood work and testing to see if any of them are a match and can donate, but doctors have warned them finding a match within the family is highly unlikely.

"We met a Barnsdall boy who needs a transplant," said Brittany. "They found a match for him from a boy in Germany."

According to Kathy, the test for a match is a simple blood draw. A donor would suffer some discomfort, but doctors tell her that donating is not a major ordeal.

"Brittany didn't even need Tylenol after her bone marrow draws," said Kathy.

Kathy wants to emphasize the need for people to be tested and to register as potential donors. While a donor can specify testing be only for a match with a certain person, it is possible to help someone else if not her daughters. She urges people to sign up for the National Marrow Donor Program.

Cassie is back in school, a typical seventh grader trying to live a normal life. She has on and off days and will endure 35 weeks of treatment. She can't do as much with her cheerleading right now, but she says the disease hasn't changed her. “I taught myself a back hand spring on the trampoline the other day," she said. It's something she was doing before her illness. “You have to relearn things mentally and physically," said Brittany. Faith, friends, and community support have gotten the family through the ordeal.

"Everyone has been so great," said Kathy. "I couldn't ask for a better community."

Friends organized a chili dinner as a fundraiser to assist the family with medical and living expenses. A single parent who works at Target in Tulsa, Kathy is grateful for the help. She has used up her vacation time during Cassie's illness and currently works extra shifts and cleans houses on the side. She's not sure how much insurance will cover of Cassie's bills. When friends approached her about the fundraiser and asked to set up an account for donations at 1st Bank Oklahoma, she was deeply moved.

"I can't do it on my own," she said. "I'm only one person."

Kathy said that people used to ask why she didn't live in Tulsa, closer to where she works. Now, more than ever, she is grateful for the close-knit community that has rallied around her.

The girls are quick to point out the sacrifices their mother has made on their behalf. Before Cassie's illness, Kathy was taking classes at Rogers State University, majoring in criminal justice. Kathy wants a career in law enforcement, but that's on hold for now. She was forced to withdraw this semester.

Kathy is proud of her daughters. She commends the leadership in faith that Brittany has shown and her strength of spirit

"She's the only person I know who is actually looking forward to a bone marrow transplant," said Kathy.

"In order to get through what I have, I get through this every day, because I have a positive attitude and faith in God," said Brittany. "But you have to talk about it. You can't keep your feelings bottled up."

"I have the utmost faith in the medical profession," said Kathy, "But don't always accept the first answer. You have to ask questions."

"You know your own body," said Brittany.

Cassie went through some denial in the beginning. "You have to talk," she said. "Or you'll break down."

Both girls are wearing smiles today, despite what they've gone through, and what they may face in the future.

"I feel good," said Brittany. But she is aware that her disease is likely to come back. Her sister's illness has told her that. It's a fact that will save both their lives, if they can find donors in time.







Support the Sontags



n Financial contributions

According to 1st Bank Oklahoma, anyone can donate to help the family with expenses simply by walking into the bank and asking to make a deposit into the Sontag account.



n Become a marrow donor

Patients searching the National Marrow Donor Program (NMDP) Registry for an unrelated donor depend on potential volunteer donors to be accessible and willing to donate if identified as a match.

When a donor joins the Registry, they commit to:

* Be listed on the Registry until your 61st birthday, unless you ask to be removed.

* Consider donation for any searching patient who matches your tissue type.

* Pay to join the Registry, in some cases.

* Stay in touch with your donor center or the NMDP. Tell them about address changes, significant health changes or if you ever change your mind about being a donor.

* Respond quickly if you are ever contacted as a match.



To learn more, visit www.marrow.org, the National Marrow Donor Program or www.marrowdonation.org