NF Heroes

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=200 BGCOLOR="#FFFFFF" TEXT="#080000" background="044d4c03.jpg"> <bR> <div> <A HREF="id110.htm" TARGET="_top" TITLE="Photo Gallery"><IMG SRC="2c97c1c0.jpg" border=0 width="124" height="28" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <bR> <div> <A HREF="id23.htm" TARGET="_top" TITLE="Latest Research"><IMG SRC="064791f0.jpg" border=0 width="121" height="31" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <bR> <div> <A HREF="id22.htm" TARGET="_top" TITLE="Help find a cure!"><IMG SRC="06a791b0.jpg" border=0 width="121" height="27" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <bR> <div> <A HREF="id18.htm" TARGET="_top" TITLE="Contact me"><IMG SRC="06c791a0.jpg" border=0 width="121" height="26" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <bR> <div> <A HREF="http://www.pbgs2.com/cgi-bin/guestbook.cgi" TARGET="_blank" TITLE="http://www.pbgs2.com/cgi-bin/guestbook.c"><IMG SRC="0597a1f0.jpg" border=0 width="122" height="31" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> </td> <td valign="top" width="100%" BGCOLOR="#FFFFFF" TEXT="#080000"> <div> <FONT SIZE="5" COLOR="#FFCC33" FACE="Arial" ><B>NF TEAM</B></FONT> <FONT SIZE="1" COLOR="#333399" FACE="Arial" >   |     <A HREF="index.htm" TARGET="_top" TITLE="NF TEAM">home</A></FONT></div> <div> <A HREF="id119.htm" TARGET="_top" TITLE="Introduction">Introduction</A>   |   <A HREF="id17.htm" TARGET="_top" TITLE="Mission">Mission</A>   |   <A HREF="id20.htm" TARGET="_top" TITLE="What is Neurofibromatosis?">What is Neurofibromatosis?</A>   |   <A HREF="id18.htm" TARGET="_top" TITLE="Contact me">Contact me</A>   |   <A HREF="id22.htm" TARGET="_top" TITLE="Help find a cure!">Help find a cure!</A>   |   <A HREF="id23.htm" TARGET="_top" TITLE="Latest Research">Latest Research</A>   |   <A HREF="id24.htm" TARGET="_top" TITLE="Event Sponsors Page">Event Sponsor's Page</A>   |   <A HREF="id21.htm" TARGET="_top" TITLE="Related Links">Related Links</A>   |   <A HREF="id42.htm" TARGET="_top" TITLE="Updates on Shannon">Updates on Shannon</A>   |   <A HREF="id53.htm" TARGET="_top" TITLE="Upcoming Events">Upcoming Events</A>   |   <A HREF="id110.htm" TARGET="_top" TITLE="Photo Gallery">Photo Gallery</A>   |   <B>NF Heroes</B></div> <div> NF Heroes</div> <DIV ALIGN="LEFT"></DIV> <div> IMPORTANT note to AOL members: hold down "control" then click the "refresh" icon if the latest information isn't visible to you.</div> <div> <B>Meet some of our NF Heroes!</B></div> <div> <A HREF="mailto:NFmarathon@aol.com" TARGET="_blank" TITLE="mailto:NFmarathon@aol.com"><B>(Please feel free to email us; we would love to feature your NF hero here!)</B></A></div> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <div> <A HREF="phoenix_2007_page_19_suzanne_parker.htm" TARGET="_top" TITLE="Phoenix 2007 Page 19"><IMG SRC="1222b3450.jpg" border=0 width="179" height="325" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A>  <A HREF="id166.htm" TARGET="_top" TITLE="Parker"><IMG SRC="973d5430.jpg" border=0 width="213" height="323" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A>   <A HREF="detroit_2006.htm" TARGET="_top" TITLE="Detroit 2006"><IMG SRC="ed45e420.jpg" border=0 width="350" height="322" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <div> <A HREF="http://www.runforparker.com" TARGET="_blank" TITLE="http://www.runforparker.com"><B>www.runforparker.com</B></A></div> <div> <B>PARKER: </B>NF2</div> <div> <A HREF="id166.htm" TARGET="_top" TITLE="Parker"><B>Please click here: to learn Parker's story</B></A></div> <div> We are very excited to have Parker join our NF hero program and we are honored to have the opportunity to run for him. People often ask us where we get the fuel to run 26.2 miles, well it's quite simple, it comes from children like Parker. Their daily struggles with NF literally inspire us to go that extra mile in the search for a cure. We train hard and raise funds with a mission of pushing the research until a cure is found. We do this so that someday <U>soon</U> children like Parker, Preston, Amber, and Shannon won't have to live their lives in fear of the next tumors growth and next surgery.  </div> <DIV ALIGN="LEFT"></DIV> <div> <B>Please keep them in your prayers.</B></div> <div> If you'd like to say hi to Parker or share your NF story with us we'd love to hear it. email <FONT SIZE="3" COLOR="#0000FF" FACE="Arial" ><A HREF="mailto:CureNFtoday@aol.com" TARGET="_top" TITLE="mailto:CureNFtoday@aol.com"><U>CureNFtoday@aol.com</U></A></FONT></div> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <div> <A HREF="https://www.active.com/donate/nfrunsphoenix/4Shawn" TARGET="_blank" TITLE="https://www.active.com/donate/nfrunsphoe"><IMG SRC="fd039be0.jpg" border=0 width="313" height="446" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <div> <A HREF="https://www.active.com/donate/nfrunsphoenix/4Shawn" TARGET="_blank" TITLE="https://www.active.com/donate/nfrunsphoe">Shawn was diagnosed with NF1 as a baby. Shawn is now almost 4 years old!</A></div> <div> <A HREF="https://www.active.com/donate/nfrunsphoenix/4Shawn" TARGET="_blank" TITLE="https://www.active.com/donate/nfrunsphoe">Click here to view his family's NF Marathon Team page! </A></div> <bR> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <div> <A HREF="id150.htm" TARGET="_top" TITLE="Preston"><IMG SRC="8adbcf20.jpg" border=0 width="188" height="242" ALIGN="BOTTOM" HSPACE="0" VSPACE="0">  <IMG SRC="8aebef30.jpg" border=0 width="190" height="243" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <div> <A HREF="http://www.runforpreston.com" TARGET="_blank" TITLE="http://www.runforpreston.com"><B>www.RunForPreston.com</B></A></div> <bR> <div> <FONT SIZE="4" COLOR="#000000" FACE="Bookman Old Style" ><B>Preston</B></FONT><B>: </B>Preston was born with a lump on his left temple, which his doctors initially thought it was from his journey through the birth canal. Tara, his mother trusted her instincts which told her that it was something more. She encouraged his doctors to look further and Preston was scheduled for a series of test including x-rays and ultimately CT scans.  The CT scans revealed that Preston had something called an Arachnoid Cyst located between his skull and his brain. This cyst caused a bone deformation that would require reconstructive surgery.  Preston had this surgery at just 7 months of age and it was very successful. After the surgery he had to be fitted for a moulding helmet to protect the <B>ear to ear incision</B> across the top of his head. Before he received his custom helmet he had <B>many incision infections</B> (on the surface) <B>taking him back to the Dr about every other day.</B> Preston has faced many other challenges and still has many concerns<B>  </B>but he is doing remarkably well, all things considered <FONT SIZE="3" COLOR="#000000" FACE="Arial" >He now has biannual MRI's, ophthamologist and oncology evaluations. </FONT>Preston is very resilient child and an inspiration to us all.</div> <DIV ALIGN="LEFT"></DIV> <div> <A HREF="id150.htm" TARGET="_top" TITLE="Preston"><B>(please click here for more photos and to learn Preston's full story)</B></A>. </div> <bR> <div>  <FONT SIZE="2" COLOR="#000000" FACE="Arial" > <HR noshade size="10" width="86%" align="center" color="#0492FC">  </FONT></div> <div> <A HREF="http://www.firstgiving.com/sethg" TARGET="_blank" TITLE="http://www.firstgiving.com/sethg"><IMG SRC="978d80b0.jpg" border=0 width="216" height="267" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A> <A HREF="http://www.firstgiving.com/sethg" TARGET="_blank" TITLE="http://www.firstgiving.com/sethg"><IMG SRC="972c60b0.jpg" border=0 width="198" height="267" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A> </div> <bR> <div> <B>Seth</B></div> <div> <B>We are honored to have Seth join our NF hero program. </B><FONT SIZE="3" COLOR="#000000" FACE="Arial" >Seth is currently struggling with many complications from NF. Please remember him in your prayers. His biggest concerns for the moment are the lesions in his brain and the large tumor in his chest. His tumors are monitored very carefully with MRIs every three months. Our NF Marathon team had the privilege of running with some of Seth's crew @ The 2006 Walt Disney World Marathon Weekend. We were very impressed!!! Awesome people! They are highly motivated and a wonderful addition to the team. We are looking forward to working with them again in the near future. </FONT></div> <DIV ALIGN="LEFT"></DIV> <div> <A HREF="http://www.firstgiving.com/sethg" TARGET="_blank" TITLE="http://www.firstgiving.com/sethg"><IMG SRC="9760bc90.jpg" border=0 width="267" height="201" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <div> <A HREF="http://www.firstgiving.com/sethg" TARGET="_blank" TITLE="http://www.firstgiving.com/sethg"><B>Click here to learn more about Seth and his family!</B></A></div> <bR> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <bR> <div> <B><IMG SRC="2d777af0.jpg" border=0 width="119" height="175" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> <IMG SRC="2d907af0.jpg" border=0 width="263" height="175" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> <IMG SRC="2db83af0.jpg" border=0 width="131" height="175" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></B></div> <div> <B>Shannon:</B> At just eight years old she has already had several MRI's and CT scans. Her most serious surgery was to remove a very aggressive cancerous (<A HREF="id44.htm" TARGET="_top" TITLE="Neuroblastoma">neuroblastoma</A>) tumor - the size of a baseball near her left kidney. She still has hundreds of tumors in her right leg, 2 in her head, and one along her spine. She also has tumors on both optic nerves. These tumors grow from her nerves and cause her pain. <FONT SIZE="1" COLOR="#000000" FACE="Bookman Old Style" ><A HREF="id42.htm" TARGET="_top" TITLE="Updates on Shannon"><I>Click here to learn more about Shannon</I></A></FONT></div> <bR> <DIV ALIGN="LEFT"></DIV> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <bR> <bR> <div> <I><IMG SRC="2e0c1910.jpg" border=0 width="193" height="145" ALIGN="BOTTOM" HSPACE="0" VSPACE="0">  <IMG SRC="2e2c1910.jpg" border=0 width="193" height="145" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> <IMG SRC="2e477910.jpg" border=0 width="119" height="145" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></I></div> <bR> <div> <B>Amber: </B>At just 4 years old she has already had 3 very aggressive surgeries. The most challenging was when surgeons had to crack her jaw to remove numerous tumors from her jowl area. It lasted almost 7 hours. They had to remove ½ of her tongue and perform  a tracheotomy.</div> <DIV ALIGN="LEFT"></DIV> <div>  <A HREF="http://www.geocities.com/giraffe_baby/finleyfamily.html" TARGET="_blank" TITLE="http://www.geocities.com/giraffe_baby/fi"><I>Click here to learn more about Amber</I></A></div> <div> <I><B>Update </B></I><I><B>AUGUST 7th 2005</B></I><I> :Amber will be starting kindergarder this fall! </I><FONT SIZE="3" COLOR="#000000" FACE="Arial" >During her school physical the doctor mentioned that it looks like she has the start of scoliosis. They will have a scoliosis survey done to make sure.</FONT></div> <div> Please keep your fingers crossed and please keep their family in your prayers. Thank you.</div> <DIV ALIGN="LEFT"></DIV> <div> Here are some updated photos of the girls:</div> <div> <IMG SRC="79578a00.jpg" border=0 width="120" height="160" ALIGN="BOTTOM" HSPACE="0" VSPACE="0">  <IMG SRC="79778a00.jpg" border=0 width="120" height="160" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> <IMG SRC="79978a00.jpg" border=0 width="120" height="160" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"> <IMG SRC="79b78a00.jpg" border=0 width="120" height="160" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> Growing up so fast!</div> <div> Here is a link to their new site for a lot more photos!:</div> <div> <A HREF="http://www.caringbridge.org/visit/ambersstory " TARGET="_blank" TITLE="http://www.caringbridge.org/visit/ambers"><U>www.caringbridge.org/visit/ambersstory</U></A><FONT SIZE="4" COLOR="#000080" FACE="Arial" ><A HREF="http://www.caringbridge.org/visit/ambersstory " TARGET="_blank" TITLE="http://www.caringbridge.org/visit/ambers"> </A></FONT></div> <bR> <div> <IMG SRC="79d8dbc0.jpg" border=0 width="141" height="188" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> UPDATE 8/8/2005: First Day of School (ALREADY!) for Amber & Courtney. </div> <div> <I><IMG SRC="2eaff8d0.jpg" border=0 width="511" height="397" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></I></div> <div> <I>By Amber @ age 4</I></div> <div>  <HR noshade size="10" width="86%" align="center" color="#0492FC">  </div> <div> <I>Please </I><A HREF="mailto:NFmarathon@aol.com" TARGET="_top" TITLE="mailto:NFmarathon@aol.com"><I>e-mail me</I></A><I> if you would like to have your NF hero highlighted here</I></div> <div> <A HREF="index.htm" TARGET="_top" TITLE="NF TEAM"><IMG SRC="05257250.jpg" border=0 width="87" height="37" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></A></div> <bR> <div> <IMG SRC="2ecff8d0.jpg" border=0 width="511" height="397" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></div> <div> <B>By Courtney (Amber's Big Sister)</B></div> </td> </tr></table></body>