Benefit planned for Alvarez family

SLEEPY EYE – A breakfast/vendor fair fund-raiser will be held from 9 a.m. to 3 p.m. Sunday, Aug. 24 for a Sleepy Eye family facing overwhelming medical expenses after their sons and father were diagnosed with uncommon illnesses recently.

Tony and Lexi Alvarez became the parents of twin boys on Jan. 29, 2013 when Lukas and Julian were born eight minutes apart at Sleepy Eye Medical Center.

Bigger challenges began when Julian was diagnosed with a rare, incurable disease – urticaria pigmentosa – a mast cell disease that causes irregular skin pigmentation and irritable lesions.

Not long after that, the Alvarez’ oldest son Isaac began having problems with his eyes. The boys went to Minneapolis for specialty care.

On top of that, Tony began suffering extreme fatigue and loss of muscle control and even loss of consciousness. Unable to work at Kraft Foods or drive, he began requiring visits to medical specialists.

The family’s lives were further complicated when Isaac and Julian each suffered seizures and wound up in the hospital, all in just two days.

Tony was later diagnosed with narcolepsy, a chronic neurological disorder that inhibits the brain’s ability to regulate sleep-wake cycles normally. The illness requires life-long treatment with costly medication. Doctors are now using different medication options in an effort to help him deal with the illness.

Lexi Alvarez, who formerly worked at New Ulm Telecom, said she’s currently staying home to take care of her husband and children since daycare costs were so costly. He hopes to be able to work from home at some point.

She talked about Julian’s health problems. “He’d sleep and eat a lot but wasn’t gaining weight like he should until we took him to the doctor,” Lexi said. “Now, he’s seeing a specialist.”

Tony’s symptoms included getting very dizzy and shaking, until he was diagnosed with narcolepsy. “It’s been quite a ride,” said Tony who worked at Kraft plus weekend work as a disc jockey. “I haven’t worked in months. I’m seeing lots of specialists, who are trying to find the right medication. Doctors told me it takes most people about 90 minutes to get into deep sleep each night. It takes me about three minutes.”

(Fritz Busch can be e-mailed at fbusch@nujournal.com).

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