If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

HEADLINE: Disorder won't keep sisters down (Fried...

Collapse

About the Author

Collapse

HCMA FORUM ARCHIVE Find out more about HCMA FORUM ARCHIVE
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • HEADLINE: Disorder won't keep sisters down (Fried...

    [HEADLINE: Disorder won't keep sisters down (Friedreich's Ataxia)]

    Author: Tim Stewart (---.dsl.dytnoh.ameritech.net)

    Date: 11-06-02 08:31

    Copyright 2002 Hattiesburg American (Hattiesburg, MS)

    All Rights Reserved

    Hattiesburg American (Hattiesburg, MS)

    September 25, 2002 Wednesday

    SECTION: HOME LIFE; Pg. 4A

    LENGTH: 1303 words

    HEADLINE: Disorder won't keep sisters down

    BYLINE: Phyllis Carter, Staff

    BODY:

    By Phyllis Pittman Carter

    American Correspondent

    "Second floor, ladies' lingerie," quipped Missy Skinner as the unreliable wheelchair lift began to rise.

    Her three sisters, laughing, moved their own wheelchairs closer to the 1989 van that is the sole means of transportation for the Skinner family of Bassfield. The van had room for two more; the fourth would have to stay home or wait for their mother, Christine Skinner of Bassfield, to return and make a second trip.

    This arrangement puts even more limitations on the sisters, who are all wheelchair bound as a result of Friedreich's ataxia, a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. Rarer still is having four members of one family stricken with the disorder. "We can't go visit our brother in Rawls Springs," said Scottie Skinner, 29.

    "We can't all go shopping together," added Stephanie Skinner, 30.

    "She's a shop-a-holic," put in Christine Skinner.

    "We haven't seen our doctor in Jackson in three years," said Missy Skinner, 33.

    Even if they could all fit in the ailing van with its faulty brakes, it would be a miserable trip. The air conditioner doesn't work and the windows don't roll down.

    Members of their church, St. Peter's Catholic in Bassfield, became aware of the situation due to a chance remark one of the girls made about the heat and lack of air conditioning.

    "They never complained," said Donna Wilson, assistant youth leader at St. Peter's. "We had no idea."

    After learning about the van's air conditioner, Wilson arranged to use funds raised in a youth event in July to repair the van.

    "We soon found out that the air conditioner was the least of the van's problems," said Wilson, who is also a teacher at Bassfield High School. From there, the whole church and parish became involved in raising funds to get the family a new van.

    When Eddie Givens, district manager of the Hattiesburg Vocational Rehabilitation office, found out, he also got involved. After meeting with the family and assessing their needs, it was determined the Skinners needed a home modification and transportation.

    "We are doing the modification, but we can't furnish transportation," said Givens.

    He notified the Mississippi Rehabilitation Association, which held a state-wide fund-raiser to help with the project.

    "I was so impressed with the family," said Givens. "They are so positive and upbeat." Givens said the Skinners never asked for any help. "This is something the church and we (Vocational Rehab) decided to do for them.

    Congressman Ronnie Shows and Sen. Billy Harvey are also assisting with the project, and a Honda Four Trax Rancher 4x4 ES (four-wheeler) was subsequently donated anonymously to be raffled off to raise funds.

    To date, the fund is half way to the goal of $30,000. Vocational Rehabilitation will do an accessibility conversion once the van is purchased. Dealers are being contacted around the state to get the best price for a van that is large enough - and tall enough - to accommodate all the sisters and their equipment.

    The Skinners not only didn't complain about the van, they never complain about their condition or limitations.

    "There's no use crying about it," said Stephanie Skinner.

    "It doesn't stop us," said Missy Skinner, who volunteers at the church on Fridays. She and Scottie are in the choir and Scottie teaches classes at the church.

    "We don't just sit in our wheelchair and think about what we can't do," added Scottie Skinner.

    "Nobody treats us differently," said Stephanie Skinner.

    For all but Missy, who had scoliosis, their early years were perfectly normal, with no indication of any abnormality. When in her midteens, however, Missy began staggering at times. At first, her problems were thought to be related to the spinal curvature, but she was later diagnosed with Friedreich's ataxia.

    Raising her children alone, Christine Skinner simply did what was necessary to see to Missy's needs. A couple of years later, Stephanie, began exhibiting the same symptoms and was also diagnosed with the condition. At 16, Scottie, the family tomboy, was diagnosed.

    Donna Skinner, now 22, was only 10 when she was diagnosed with Friedreich's ataxia, and her condition deteriorated faster than had that of her sisters. Even so, she was homecoming queen her senior year at Bassfield High, by which time all four were confined to wheelchairs.

    With four of her seven children wheelchair bound, much of Christine Skinner's time is devoted to helping her daughters. She also works part-time at Ward's in Bassfield. Her youngest daughter, Pamela, 20, attends Jones County Junior College, but comes home on weekends to help out. Pamela Skinner has no signs of the condition, nor do Christine's grown sons, Noel and Heath. Another son, Gerald, died of leukemia at age 6, just days before Scottie was born.

    The girls are close, and like all sisters have their share of trivial spats, but even more laughter.

    "We are here for each other," said Scottie Skinner, but they all agree that their mother is what holds it all together.

    "She's our rock," said Missy Skinner, and Donna Skinner added, "She's the glue."

    To help

    n Fund-raising events tentatively planned include the Richton Pecan Festival Sunday; Wal-Mart on U.S. 98 on Nov. 2; Wal-Mart on U.S. 49 Oct. 6; Hubfest Oct. 12 and the Longleaf Trace Birthday Challenge in Prentiss Nov. 9. For information, call Gail Prentice, 943-6688; Johnny O'Connell, 792-5359; Deacon Bob Everard, 792-5760; or Donna Wilson, 943-5712 or 943-5069.

    n Donations can be made to St. Peter's Church Skinner Girls Van Project Fund, P.O. Box 10, Bassfield, MS 39421; or to Union Planters Bank, where an account has been established for the project.

    n Tickets for the four-wheeler drawing are $5 and can be purchased through the parish. Other parishes throughout the diocese are asked to consider selling raffle tickets and can contact the parish for more information. The raffle will be held on Thanksgiving Day.

    Submitted photo

    Missy Skinner is lifted into her family's van with help from her mother, Christine, center, as her sisters Donna, from left, Scottie and Stephanie wait their turns. All four sisters have Friedreich's ataxia, a rare, neurodegenerative disease. Their church, St. Peter's Catholic Church in Bassfield, is raising money to replace their unreliable old van.

    "There's no use crying about it."

    - Stephanie Skinner, wheelchair bound by Friedreich's ataxia

    Thousands suffer from symptoms of Friedreich's

    Special to the American

    About one in 50,000 people in the United States have Friedreich's ataxia.

    Onset of symptoms is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later.

    Friedreich's Ataxia Research Association is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.

    Symptoms:

    n Muscle weakness and loss of coordination (ataxia) in the arms and legs

    n Vision impairment, hearing loss and slurred speech

    n Aggressive scoliosis (curvature of the spine)

    n Diabetes mellitus or carbohydrate intolerance

    n A serious heart condition (enlarged heart - hypertrophic cardiomyopathy).

    These symptoms reflect the death of cells in certain parts of the nervous system. The mental capabilities of people coping with Friedreich's ataxia, however, remain completely intact. The disorder causes speech problems, vision impairment and hearing loss.

    For most, progressive loss of muscle strength and control leads to motor incapacitation and the full-time use of a wheelchair by the late teens or early 20s.

    Many require surgery for their scoliosis. There are currently no treatments or cures.

    n To learn more, log on to www.frda.org.

    LOAD-DATE: October 12, 2002

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HEADLINE: Disorder won't keep sisters down (Friedreich's Ataxia)]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-06-02 08:36

    Yes this is interesting... Many with this condition have HCM as well...it has been well reported in the med. lit.

    More later
    NOTE: This is a post from the previous forum message board.

Today's Birthdays

Collapse

Working...
X