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One of "our own" in need

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Lisa Salberg Find out more about Lisa Salberg
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  • One of "our own" in need

    Copyright 2004 The News-Messenger (Fremont, OH)
    All Rights Reserved
    The News-Messenger (Fremont, OH)

    January 14, 2004 Wednesday


       Mother fights for son's life as genetic heart condition terrorizes herself
    and her family

       By SARAH WILLIAMS

       Staff writer

       Juanita Mendoza has already lost eight siblings, a nephew and two of her five
    children to the genetic heart condition that wracks her own body with pain
    everyday.

       Now, all she wants is to see that her 13-year-old son, Eleazar Mendoza, gets
    a heart transplant - a heart transplant that will relieve him from the fear of
    an early death and give him the kind of life he hasn't had since he was 7.

       "He's 13 - he's got his whole life ahead of him," Juanita said, giving her
    son a gentle smile. " ... I just want to stay alive long enough to make sure he
    is going to have life. I'm tired of fighting myself and I'm not getting any
    younger.

       "I want to be around at least long enough to teach him how to take his
    medicine and how to take care of himself - to eat healthily and exercise. I want
    him to have a good life, a long life, and to have no children. I told them all
    to adopt. I'll love 'em just as much."

       Juanita and Eleazar have hypertrophic cardiomyopathy - HCM - a genetic heart condition that results in a thickening of the heart muscle, according to the HCMAssociation. The condition can cause shortness of breath, chest pain, heart palpitations, lightheadedness, blackouts or sudden death.

       An estimated 300,000 people have HCM in the United States. There is no cure,
    and symptoms of the condition can begin at any time in a person's life. It is
    unclear what causes the onset of symptoms.

       Juanita said that of her 12 siblings, four are left living. Of those four,
    two don't have the condition and neither do their children or grandchildren.
    Those who have already died didn't make it past the age of 30.

       Along with her daughter Tarina, Juanita lost her son, Cresensio Mendoza in
    2001. He was 15-years-old. And after Cresensio died, she and her husband were
    legally separated.

       "When we lost our son, the life came out of him," Juanita said. "He changed."

       Juanita's other two children, Ramiro Garza, 26, and Rebecca Neal, 24, both
    live in the state of Kansas and have the condition. Juanita said Rebecca isn't
    doing well right now - and she too, lost a son, Angel, to HCM.

       Juanita explored a heart transplant herself, but she was told that in order
    for it to work properly she would likely need both a heart and lung transplant.

       "He was afraid that if he got me on the table, I would die," she said of her
    doctor.

       To put the strain HCM puts on the heart in perspective, the average adult
    heart rate is about 72 beats per minute. The danger zone - when a defibrillator
    will often activate - is about 200 to 230 beats per minute. Juanita said her
    heart was palpitating at about 300 beats per minute when she got "the call" and
    rushed her daughter Tarina Roberts to the hospital several years ago for a heart
    transplant.

       Juanita collapsed and had to be treated herself at the Columbus hospital upon
    arrival. Years later, in 1999, Tarina died at the age of 25 after her body
    rejected the heart.

       Eleazar and Juanita both experience fatigue, shortness of breath and intense
    palpitations. Both of their hearts have been fitted with a pace maker - a device
    attached to the heart designed to keep it beating steadily - and a
    defibrillator. A defibrillator electrically shocks a person's heart to get its
    rhythm back on track when it palpitates.

       Juanita said that if she's sitting when her defibrillator shocks her, it
    "throws her into a standing position," and then she must be rushed to the
    hospital to be checked out. The 48-year-old has been to the hospital hundreds of
    times in cardiac arrest - yes, hundreds. Each time, the doctors electrically
    shock her heart back on track.

       In 1992 - the year she got her pacemaker and defibrillator - Juanita
    estimates she was to the hospital and shocked more than 100 times that year
    alone. While being interviewed Friday, she said she was actually in heart
    failure, but she's just used to it.

       "You can be fine and happy one minute and the next you're in the hospital
    dying," she said, solemnly. "There are times I've been to the hospital three,
    four times a week. They say they put you to sleep, but 300 Volts is something
    you don't forget."

       Eleazar sees Dr. Blane Grubb at the Medical College of Ohio in Toledo and
    must go to the Cleveland Clinic each month for check-ups. Dr. Alvin Jackson,
    Eleazar's local doctor at Community Health Services, said one of the greatest
    concerns of HCM is the increased risk for sudden death.

       "It's an unpredictable situation, and that brings a lot of uncertainty to
    life where they really re-assess everyday," Jackson said. "There is a lot of
    fear on the part of family members and the kids themselves. The kids can become
    depressed. They can't do the normal physical activities other kids do.

       "When something like this happens in childhood, it can really change their
    perception of what childhood is. We think of childhood as a carefree time of
    innocence and discovery, and they run, jump and have a good time.

       "That's compromised in these children."

       Aside from serving as Eleazar's doctor, Jackson said he also knows Juanita
    and Eleazar on a personal level.

       "They're a very courageous family," Jackson said. "Mrs. Mendoza has given all
    that any mother could give. ... I just know the struggles she goes through, all
    that has happened, and yet she sees so much of the beauty in life.

       "She's a wonderful lady."

       Juanita would like to see Eleazar avoid some of the pain she has experienced.
    She keeps a close eye on him, making sure he takes his medicine and doesn't do
    anything to strain himself. Juanita has home-schooled Eleazar off and on for
    much of his life, keeping him home for his entire fifth- and sixth-grade years.
    Because he begged and begged, she finally let her son go back to school in
    seventh grade.

       Eleazar can't walk fast enough or expend the energy to get to class on time,
    so he's transported through the halls of the Fremont Middle School in a
    wheelchair. He sleeps a lot - like his mother - and just wishes that someday, he
    'll be able to go for walks or skateboard, like his friends.

       Juanita holds a beeper that will go off when a heart for transplant is
    available for Eleazar - and their rush to the hospital will begin. She thinks
    she'll literally have a heart attack when it activates.

       " ... It scares me some of the time," the soft-spoken Eleazar said of living
    with his condition. "When (the beeper) goes off, I will probably be crying the
    whole time. But I'll finally get to do the things my friends do and not sit and
    watch."

       Someday, his mother said, Eleazar would love to direct movies. The two smiled
    and joked about how often the teen, shyly hiding under the hood of his red
    SpongeBob sweatshirt, watches the flick "Dumb and Dumber." But when his mother
    told him he should make a movie about his life, he glanced skyward and pressed a
    finger to his lips, "Shhhhhh."

       Eleazar hasn't been without his own trips to the hospital. Most recently, in
    July of 2002 he was raced by Life Flight Medical Helicopter from Memorial
    Hospital to the Medical College of Ohio in Toledo. And on New Year's Eve 2002,
    Eleazar was rushed to the hospital from an overnighter at the Sandusky County
    YMCA, his heart malfunctioning on both sides.

       The pair, who live alone and get by on welfare and Medicaid, have been told
    it could be anywhere between now and five years before the beeper goes off. And
    until it does, Eleazar and Juanita plan to do their best to survive.

       "A lot of people have told me I'm a strong woman, but I don't think so,"
    Juanita said. "I just have a lot of friends. My children all keep me going. I
    want to make sure he's going to be all right.

       "If I get sick and go, I want to make sure he has a better life."

       Contact staff writer Sarah Williams at 419-334-1051 or
    [email protected].

       JUANITA MENDOZA holds a picture of her son, Cresensio, who died at the age of
    15 in 2001 from the same heart condition that requires her other son, Eleazar,
    left, to have a heart transplant in order to survive.

       News-Messenger/David Distelhorst

    LOAD-DATE: January 15, 2004

    2 of 2 DOCUMENTS

    Copyright 2004 The News-Messenger (Fremont, OH)
    All Rights Reserved
    The News-Messenger (Fremont, OH)

    January 14, 2004 Wednesday

    SECTION: LOCAL; Pg. 6A

    LENGTH: 223 words

    HEADLINE: How to help

    BYLINE: Staff, Staff

    BODY:

       A benefit dance will be held for 13-year-old Eleazar Mendoza from 8 p.m. to
    midnight Saturday at the Sandusky County Fairgrounds. Music will be provided by
    Amanda Reyna y Sus Reyes, and cost is $7 per person or $12 per couple.

       Mendoza has hypertrophic cardiomyopathy - HCM - a genetic heart condition
    that results in a thickening of the heart muscle, according to the HCM
    Association. The condition can cause shortness of breath, chest pain, heart
    palpitations, lightheadedness, blackouts or sudden death.

       If Eleazar doesn't regularly attend his monthly check-ups at the Cleveland
    Clinic, he could be taken off of the list for a heart transplant. At any given
    time, the teen's beeper could go off, telling him he must rush to the hospital
    for the transplant.

       Eleazar's mother, Juanita Mendoza, is hoping the benefit will raise about
    $1,000, so that she might be able to eat, pay for a hotel room and buy gasoline
    for these trips. A friend has agreed to drive or loan her car to Juanita, but
    the tires are bald. She hopes to fit the car with replacement tires as well.

       Medicaid should cover the cost of the $300,000 transplant, Juanita said.

       To make a monetary donation, make checks to: Rosa Scherer, P.O. Box 165,
    Fremont, OH 43420.

       Scherer is a friend of the family and can provide a receipt upon request.
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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