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One in a million: Macon teen fights rare disease

Ethan was recently diagnosed with HLH, an immunodeficiency that affects organs and tissues / Evan Watson (WGXA)

MACON, Ga. -- A 15-year-old Mount de Sales student who was diagnosed with a life-threatening illness just two weeks ago is now back home getting stronger each day.

Ethan Rimando was admitted to Navicent Health after suffering from a virus for nine days in late April.

"When my wife texted me that he could not remember his name, I was crushed of course," said father Leonardo Rimando. "I was crushed and I had to be strong."

The doctors soon diagnosed him with Hemophagocytic Lymphohistiocytosis (HLH), a rare immunodeficiency caused by overactive white blood cells that can cause swelling, redness, heat, pain and damage to organs and tissue.

It can cause fevers, enlarged spleens, low blood counts, liver abnormalities and even neurological problems. It only occurs in 1.2 cases per million, according to the Histiocytosis Association.

Although HLH is not a cancer, cancer treatments are used in patients. Ethan began his first chemotherapy and steroid treatment last Saturday.

"It was crushing to see him struggle," Leonardo said. "His suffering is the worst part. He is the kindest, humblest kid who asks for nothing."

It wiped his immune system clean and now he is at home to build it back up.

While he's weak for now, Ethan is staying positive. He even said the disease has given him a new perspective on life.

"Just a different look at stuff, just to sit down, relax and see the wonders, the beauties of life," Ethan said.

Ethan said everyday he gets stronger and he thanks God.

"It has strengthened his faith in his church, faith in his friends, his school, his community, his tennis community and his family," Leonardo said.

Ethan will undergo up to 40 weeks of treatment, a possible bone marrow treatment and other drugs to battle the disorder.

Leonardo said they have gotten support from their family and friends that is "overwhelming and humbling."

Ethan is evening taking his disease as a learning opportunity, saying he wants to pursue a career in medicine.

"Somewhere in the medical field because I thought it was really cool and it's helping others and not just yourself -- thinking about others," Ethan said.

For more information on Ethan's health and his condition, visit his GoFundMe.

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