Jana fights against degenerative brain condition; Specialist gives hope

November 23, 2010   ·   2 Comments

By Donovan Ortega

Since the age of three, Jana Hugon has been battling a degenerative brain condition that has slowly robbed her of freedoms often taken for granted. The size of her brain is steadily decreasing. Her legs are paralyzed. She has limited use of her arms and hands. She has trouble swallowing and speaks with great difficulty. But despite these things, Jana still smiles.

She sits quietly and sucks on a McDonald’s smoothie that her brother, Newton, raises to her lips. She is unable to eat solid food, but still, she grins as the confection hits her tongue.  Her mother, Daisy Hugon, walks into the room and places her hand on Jana’s thigh. Daisy is small in stature, but speaks with great strength and conviction that has developed through years of loving care.

“When I look at my daughter, I see hope,” says Daisy.

Jana was born in Brazil, a beautiful, healthy girl. She developed an eye condition that affected her sight in sunlight. To combat the ailment, she was prescribed a medication that had been banned in the United States, but not Brazil. The drug had a severe reaction with her neurological system and began systematically shutting down parts of her body. Within a week, Jana was paralyzed. She was taken to medical centers across Brazil, from Sao Paolo to Rio Di Janeiro, but her condition worsened. Daisy began writing medical centers across the globe, attempting to interest a research team in her daughter’s undiagnosed condition. The University of Miami offered it services, and in 1999, Jana and her family moved permanently to Miami. Small progresses were made, but her condition slowly regressed. She became confined to a wheel chair, suffered numerous illnesses due to her damaged immune system, and lost the ease of speech and ability to swallow solid foods.

In August, after moving to Boynton Beach, Jana was being fed breakfast  when, suddenly, she lost consciousness. After being rushed to Bethesda Memorial Hospital, they stabilized her condition. But in September, doctors suggested she be put into Hospice because of a severe case of Pneumonia.

“The doctors had given up hope,” says Daisy. “But we didn’t.”

Horrified by this prospect, the Hugon family was referred to a bone marrow specialist at the South Florida Bone-Marrow and Stem Cell Transplant Institute. He had pioneered a procedure in which a patient’s bone marrow could be stimulated to release adult stem cells into the blood stream. The treatment has worked with great success at restoring brain function in stroke and cancer patients. The specialist is very optimistic that, not only will the treatment stop Jana’s brain from deteriorating, but might restore her health to what it was ten or fifteen years ago.

However, because the treatment is experimental, the Hugon’s insurance company won’t cover the costs of the $50,000 procedure. But the Hugon’s remain determined. They have developed a website called HopeForJana.com that individuals can access and donate to Jana’s cause. On December 5th at 9 AM, a walk will take place in Pompano beginning at the Brazilian Community Center as a benefit for Jana.

“Her brain will be re-formed,” said Daisy firmly, as she looks longingly at Jana. “There is no doubt in my mind that we will raise the money.”

Newton plays with Jana’s hair as he continues to feed her the smoothie.

“In a lot of ways she’s an inspiration to me,” says Newton. “You look at your own problems, and you look at her and she’s always smiling.”

Newton touches Jana’s shoulder and whispers an inside joke into her ear. She erupts into hysterical laughter and she smiles again, lighting up the room. Daisy fondly recalls memories with Jana, explaining her quince’ in detail.

“She danced with 15 boys!” laughed Daisy.

Daisy also recounts a humorous plane flight in which she expressed her firm attachment for the Latin-American pop singers, Leandro and Leonardo.

“Jana loves music, especially Leandro and Leonardo.”

During a flight to Brazil, a professional South-American singer serenaded Jana. When asked if she enjoyed the song, Jana promptly told him “no”. She preferred Leandro and Leonardo. Months later she received free tickets to a Leandro and Leonardo concert.

As Daisy tells the story, Jana’s eyes widen and she begins to laugh.

Even through hardships, the Hugon’s have had joyful times. This Thanksgiving won’t be any different.

“While we eat this Thanksgiving, I’m going to be so grateful for this doctor and the hope he has given us,” says Daisy. “And also my husband, Brian. He gives so much support.”

Newton nods his head in agreement.

“I’m thankful for Jana. I’d give my life for her. I love her so much,” says Newton.

As for Jana, she continues living through difficulty with a genuine smile on her face. She has only one request. After she has undergone treatment and is able to eat solid foods again, she’d like a steak. When asked what temperature she would like it cooked, she answers definitively.

“Well-Done!”she calls out, and the room erupts with laughter.

And Jana is still smiling.

To donate to Jana’s treatment visit www.hopeforJana.com.

You can also deposit donations at any Sun Trust Bank using the account number: HOPE FOR JANA.

Add Jana Hugon as a friend on Facebook and follow her treatment!

By Online Staff 1