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sma.htm
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<!doctype html public "-//w3c//dtd html 4.0 transitional//en">
<html>
<head>
<meta http-equiv="Content-Type" content="text/html; charset=iso-8859-1">
<meta name="description" content="John Farese has been disabled since birth with Spinal Muscular Atrophy, a disease related to muscular dystrophy. Using a speech recognition computer system, John is serving Jesus Christ through the Internet on his web pages, that are designed to provide information and links to Reformed Baptist Resources.">
<meta name="keywords" content="Christian, salvation, Jesus, Christ, reformed, Baptist, disabled, Farese, churches, web, page, design, music, Bible, Bibles, angel, angels, heaven, Hell, cross, Testament, old, new,.">
<meta name="GENERATOR" content="Mozilla/4.75 [en] (Windows NT 5.0; U) [Netscape]">
<title>FARESE.COM</title>
</head>
<body text="#000000" bgcolor="#FFFFFF" link="#FFFFFF" vlink="#FFFFFF" alink="#FFFFFF" background="assets/backgrey.gif">
<center><table BORDER=0 CELLSPACING=0 CELLPADDING=0 COLS=1 WIDTH="800" >
<tr>
<td ALIGN=RIGHT VALIGN=TOP HEIGHT="146" BACKGROUND="assets/logo.jpg">
<div ALIGN=right><table BORDER=0 COLS=4 WIDTH="400" BACKGROUND="assets/blueback.jpg" >
<tr ALIGN=CENTER VALIGN=CENTER>
<td>
<center><b><font face="Calibri"><font size=-1><a href="index.htm" style="text-decoration:none">HOME</a></b></center>
</td>
<td><b><font face="Calibri"><font size=-1><a href="about.htm" style="text-decoration:none">ABOUT</a></b></td>
<td><b><font face="Calibri"><font size=-1><a href="links.htm" style="text-decoration:none">LINKS</a></b></td>
<td><b><font face="Calibri"><font size=-1><a href="support.htm" style="text-decoration:none">SUPPORT</a></b></td>
</tr>
</table></div>
</td>
</tr>
<tr>
<td BGCOLOR="#FFFFFF">
<table BORDER=0 COLS=2 WIDTH="100%" >
<tr ALIGN=LEFT VALIGN=TOP>
<td WIDTH="200" BACKGROUND="assets/blackbar.jpg">
<table BORDER=0 CELLPADDING=3 COLS=1 WIDTH="100%" BACKGROUND="assets/blackbar.jpg" >
<tr>
<td><b><font face="Calibri"><font size=-1><a href="about.htm" style="text-decoration:none">ABOUT</a></b></td>
</tr>
<tr>
<td ALIGN=LEFT VALIGN=TOP BACKGROUND="assets/redbar.jpg"><b><font face="Calibri"><font size=-1><a href="sma.htm" style="text-decoration:none">Disability</a></b></td>
</tr>
<tr>
<td><b><font face="Calibri"><font size=-1><a href="personal.htm" target="new" style="text-decoration:none">Personal
Interests</a></b></td>
</tr>
<tr>
<td><b><font face="Calibri"><font size=-1><a href="articles.htm" target="new" style="text-decoration:none">Articles</a></b></td>
</tr>
<tr>
<td><b><font face="Calibri"><font size=-1><a href="design.htm" target="new" style="text-decoration:none">Web
Design</a></b></td>
</tr>
<tr>
<td><b><font face="Calibri"><font size=-1><a href="support.htm" target="new" style="text-decoration:none">Support
this Site</a></b></td>
</tr>
<tr>
<td><a href="http://www.amazon.com/exec/obidos/redirect-home/faresecom" target="new"><img SRC="assets/amazon1.jpg" BORDER=0 height=49 width=125></a></td>
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<td ALIGN=LEFT VALIGN=TOP HEIGHT="100%"><a href="mailto:johnny@farese.com"><img SRC="assets/email.gif" BORDER=0 height=26 width=89></a></td>
</tr>
</table>
</td>
<td WIDTH="590">
<table BORDER=0 COLS=1 WIDTH="100%" >
<tr>
<td BGCOLOR="#CCCCCC">
<center><b><font face="Verdana"><font color="#000066"><font size=-2>Therefore6
we do not lose heart.</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>Even though
our outward man is perishing,</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>yet the
inward man is being renewed day by day.</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>For our
light affliction, which is but for a moment,</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>is working
for us a far more exceeding and eternal weight of glory,</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>while we
do not look at the things which are seen,</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>but at
the things which are not seen.</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>For the
things which are seen are temporary,</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>but the
things which are not seen are eternal.</b>
<br><b><font face="Verdana"><font color="#000066"><font size=-2>2 Corinthians
4:16-18</b></center>
</td>
</tr>
<tr>
<td>
<hr WIDTH="100%"></td>
</tr>
<tr>
<td>
<table BORDER=0 COLS=2 WIDTH="100%" >
<tr ALIGN=LEFT VALIGN=TOP>
<td WIDTH="55%"><font face="Verdana"><font size=-2>In 1954 only eight months
after my older brother Bernie was born, my parents received the devastating
news that he had Spinal Muscular Atrophy. A little more than two
years later, I was born with the same disease and four years following
my diagnosis, my sister Tina, the fourth child in a family of seven was
also diagnosed with the same illness.
<p><font face="Verdana"><font size=-2>Spinal Muscular Atrophy (SMA) is
a genetic disease affecting the part of the nervous system that controls
voluntary muscle movement.
<p><font face="Verdana"><font size=-2>Most of the nerve cells that control
muscles are located in the spinal cord, which accounts for the word spinal
in the name of the disease. SMA is muscular, because its primary effect
is on muscles, which don�t receive signals from these nerve cells. Atrophy
is the medical term for wasting or shrinkage, which is what generally happens
to muscles when they�re not active.
<p><font face="Verdana"><font size=-2>SMA involves the loss of nerve cells
called motor neurons in the spinal cord and is classified as a motor neuron
disease.
<p><font face="Verdana"><font size=-2>Most cases of SMA are caused by a
deficiency of a motor neuron protein called SMN, for survival of motor
neurons.
<p><font face="Verdana"><font size=-2>This protein, as its name implies,
seems to be necessary for normal motor neuron function. Recent evidence
suggests that a lack of SMN might also directly affect muscle cells.
<p><font face="Verdana"><font size=-2>There�s a great deal of variation
in the scope and severity of SMA in different people. My brother,
sister and myself have Type 1 SMA otherwise known as (Werdnig-Hoffmann
Disease)
<p><font face="Verdana"><font size=-2>Children with SMA who are very weak
in the early months of life and have breathing, sucking and swallowing
difficulties in infancy aren�t likely to have a good prognosis. In the
past, it was said that such children weren�t likely to survive more than
two years. Today, this is still often true.
<p><font face="Verdana"><font size=-2>However, with technology to take
the place of natural breathing and eating functions, such children can
often survive several years. Mechanical ventilation (today�s ventilators
are portable, in contrast to the "iron lungs" and heavy machinery of former
decades) and feeding tubes that go directly into the stomach (not down
the throat) can prolong life.
<p><font face="Verdana"><font size=-2>Mental and emotional development
and sensation are entirely normal in SMA.
<p><font face="Verdana"><font size=-2>Many children with SMA can benefit
greatly from physical therapy and assistive technology.
<p><font face="Verdana"><font size=-2>Though being bedridden for the past
several years, by the grace of God, Bernie and I have overcome the odds
and live productive and happy lives. In God's all-wise providence,
my sister Tina died just before reaching age four from this illness.
<p><font face="Verdana"><font size=-2>Please remember my family in your
prayers, as we seek to glorify God in our circumstances.</td>
<td WIDTH="35%">
<center><table BORDER=0 COLS=1 WIDTH="100%" >
<tr>
<td>
<center><img SRC="assets/sma2.jpg" height=170 width=200></center>
</td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font color="#663366"><font size=-2>The
muscles closer to the center of the body (proximal muscles) are usually
more affected in spinal muscular atrophy than are the muscles farther from
the center (distal muscles). </b></td>
</tr>
<tr>
<td>
<hr WIDTH="100%"></td>
</tr>
<tr>
<td>
<center><img SRC="assets/sma1.jpg" height=307 width=250></center>
</td>
</tr>
<tr>
<td BGCOLOR="#FFFFFF"><b><font face="Arial,Helvetica"><font color="#663366"><font size=-2>Muscle-controlling
nerve cells (motor neurons) are located mostly in the spinal cord. Long,
wirelike projections connect the motor neurons to muscles in the limbs
and trunk. Normally, signals from the neurons to the muscles cause muscles
to contract. In SMA, motor neurons are lost, and muscles can�t function. </b></td>
</tr>
<tr>
<td BGCOLOR="#663366">
<center><b><font face="Arial,Helvetica"><font color="#FFCCFF"><font size=-1>Disability
Links</b></center>
</td>
</tr>
<tr BGCOLOR="#330033">
<td>
<table BORDER=0 CELLPADDING=3 COLS=1 WIDTH="100%" >
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.fsma.org/" style="text-decoration:none" target="new">Children
& Families with SMA</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.joniandfriends.org/" style="text-decoration:none" target="new">Joni
& Friends</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.passy-muir.com/" style="text-decoration:none" target="new">Passy-Muir</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.specialneedsservices.com/" style="text-decoration:none" target="new">Special
Needs Services</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.angelecu.com/" style="text-decoration:none" target="new">Angel
ECU</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.digitalriver.com/v2.0-img/operations/scansoft/site/367062/367062_dns-talk.html" style="text-decoration:none" target="new">Dragon
Systems</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="http://www.abilityhub.com/" style="text-decoration:none" target="new">AbilityHub</a></b></td>
</tr>
<tr>
<td><b><font face="Arial,Helvetica"><font size=-2><a href="hoyt.htm" style="text-decoration:none" target="new">Dick
and Rick Hoyt (Video)</a></b></td>
</tr>
</table>
</td>
</tr>
<tr BGCOLOR="#006600">
<td>
<center><a href="http://www.amazon.com/gp/product/0852345003?ie=UTF8&tag=faresecom&link_code=as3&camp=211189&creative=373489&creativeASIN=0852345003" target="new"><img SRC="assets/jb_book1.gif" BORDER=0 height=180 width=110></a></center>
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<center><b><font face="Arial,Helvetica"><font size=-1><a href="http://www.amazon.com/gp/product/0852345003?ie=UTF8&tag=faresecom&link_code=as3&camp=211189&creative=373489&creativeASIN=0852345003" style="text-decoration:none" target="new">Purchase
Here</a></b></center>
</td>
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</table></center>
</td>
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</table>
</td>
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</td>
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<td HEIGHT="25" BACKGROUND="assets/blueback.jpg"><img SRC="assets/line.jpg" height=6 width=800></td>
</tr>
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