Heidi's Room

Heidi is 11 years old and moved to the United States from Ecuador with her parents because she has a rare brain disease called Rasmussen's Encephalitis, which is caused by inflammation of brain cells in one hemisphere. Its cause is unknown, but results in seizures often difficult or impossible to control with medication, and eventually results in brain shrinkage. She originally came here to have brain surgery, but since the surgery she continues to need physical and occupational therapy which is not available to her in Ecuador. Although she is eleven, she is at a five year old level, but she continues to work hard and her parents hope she will eventually catch up to her age! She loves pink and blue and flowers and butterflies so this was the theme for her room.

Here is an excerpt from the Cleveland newspaper by Dora Steaneff-Kline, Sarah Treffinger.

Doctor Ajay Gupta's first impression of Heidi is seared in him memory. The little girl with long dark hair made no eye contact. Her face and right arm twitched constantly. And she was so uncomfortable that she covered her face with her left hand, as if to hide herself.

For two years, the 10 year old had seizures that caused her neck and right arm to stiffen and her eyes to roll back inside her head. Sometimes she lost control of her bladder. In April, she stopped going to school. At one point during the summer, she could not chew or speak.

Heidi met Gupta, a pediatric epilepsy specialist at The Cleveland Clinic, in late September, after traveling from her home in Quito, Ecuador. Her father, Guido, had high hopes. He prayed that Dr. Gupta and his colleagues would know how to make Heidi better. He even wondered if he could treat her using a gamma knife, a non surgical procedure he had researched that was not available at home.

Heidi's father did not know that a more drastic approach would be the only option presented, or that he would have to make the most difficult decision of his life.

A recording of Heidi's seizures along with other test results, her medical history and an exam, confirmed Gupta's suspicion that she had Rasmussen's encephalitis, a rare neurological disorder.

Below are some pictures from the paper of Heidi and her family before and after the surgery.

Heidi, left, smiles on her seventh birthday, one year before she started having seizures. She is pictured with her sister, Jemima, half-brother, Hans, cousin, Luis Emilio Heredia, and brother, Guido, in back. Hans, 5, died in 2004 after a fall.

Cleveland Clinic therapists work with Heidi in October, about a week after neurosurgeons removed parts of her brain to stop frequent, potentially fatal seizures.

Heidi shares a hug

Heidi grimaces as she bends down to pick up a toy during therapy with Hilary Baker at the Cleveland Clinic. In November, the muscles on Heidi's right side hurt from not being used, and those on the left hurt from overuse.