Cystic Fibrosis devastates Lawton family - KSWO 7News | Breaking News, Weather and Sports

Cystic Fibrosis devastates Lawton family

Lawton_Cystic Fibrosis is a devastating disease that strikes young children.  It is a genetic disease with no cure, and it attacks the lungs and digestive system, so that young children are living with a kind of constant pneumonia, struggling just to breathe and eat.

The treatments for CF are extensive, exhausting, and sometimes aggravating.  But with research these children are now living into their 30s and 40s; however some parents say that's not enough.

Some Lawton parents are watching their son slowly fade away, and there's nothing they can do because there simply isn't enough money to research new treatments to find a cure.  So the James family is trying to change that.

Seth James was 4-months-old when doctors discovered he had cystic fibrosis.  "You don't know how to react, what to expect, what's going to happen," said his father, Kent James.  "But we finally, you know, we had our pity party and we finally got over that, because it's not going to do us any good, or do him any good, to keep being sad."

Seth is now nine years old.  "This last year has been the hardest year, really, for him," said his mother, Mandy James.  "He's been in the hospital twice and we decided to try the IVs at home, which is an around the clock schedule for my husband and I both, and trying to keep up work and the other kids and everything else we do on a normal daily basis and it's harder.  But it's harder to be in the hospital and be away from everybody."

His parents treat him like every other kid, but with that attitude, they know he pushes himself too hard.  So when his lungs get weak and he starts to choke, they say it breaks their hearts to make him slow down.  "We have to constantly think about it," said Mandy. "It does make it more difficult, because it does still set Seth apart.  But at the same time we're fighting to put Seth back in the norm.  You know, to make him just another kid out there."

Their family works together to raise awareness and money for the Cystic Fibrosis Foundation, and the progress they've made so far has helped supply better medications, more advanced treatments, and genetic tests at earlier ages.  So these kids are living longer, "but then they're getting things like diabetes as teenagers and osteoporosis and arthritis," she said.

New research takes money - a lot of it.  They've gotten a little help from donations, but CF only affects 30,000 people in the U.S., and is too low in priority to receive government funding.  So they're working on their own to raise money, and help Seth live longer. "I wouldn't want Seth to be 40 or 50 years old and not have a life either," she said.  "So hopefully with the money that's raised and research, we can get more years.  But we can also get good quality of years."

They say they parents should never have to watch a child die; but as long as Seth's story can help another child find a cure, his long fight will all be worth it, and they'll be proud to know their son made it home.

If you would like to contribute to research for Cystic Fibrosis, you can participate in an awareness walk this Saturday, at Elmer Thomas Park starting at 6 p.m.

To make a donation directly to the foundation, visit their link here.

  • Local NewsNewsMore>>

  • NRA links school violence to Ritalin but experts deny link

    NRA links school violence to Ritalin but experts deny link

    Sunday, May 20 2018 6:51 PM EDT2018-05-20 22:51:57 GMT
    Monday, May 21 2018 12:32 PM EDT2018-05-21 16:32:56 GMT
    (Elizabeth Conley/Houston Chronicle via AP). Flags fly at half staff in front of the justice center at Santa Fe, Texas on Sunday, May 20, 2018. Congregations in this deeply religious community near Houston gathered Sunday for their first worship servic...(Elizabeth Conley/Houston Chronicle via AP). Flags fly at half staff in front of the justice center at Santa Fe, Texas on Sunday, May 20, 2018. Congregations in this deeply religious community near Houston gathered Sunday for their first worship servic...
    The National Rifle Association's incoming president is linking school shootings to using medications such as Ritalin.
    The National Rifle Association's incoming president is linking school shootings to using medications such as Ritalin.
  • Trump thrusts abortion fight into crucial midterm elections

    Trump thrusts abortion fight into crucial midterm elections

    Friday, May 18 2018 12:40 AM EDT2018-05-18 04:40:58 GMT
    Monday, May 21 2018 12:32 PM EDT2018-05-21 16:32:55 GMT
    (AP Photo/Manuel Balce Ceneta, File). FILE - In this Jan. 19, 2018 file photo, President Donald Trump speaks to participants of the annual March for Life event, in the Rose Garden of the White House in Washington. The Trump administration will resurrec...(AP Photo/Manuel Balce Ceneta, File). FILE - In this Jan. 19, 2018 file photo, President Donald Trump speaks to participants of the annual March for Life event, in the Rose Garden of the White House in Washington. The Trump administration will resurrec...

    The Trump administration is resurrecting a Reagan-era rule that would ban federally funded family planning clinics from discussing abortion with women, or sharing space with abortion providers.

    The Trump administration is resurrecting a Reagan-era rule that would ban federally funded family planning clinics from discussing abortion with women, or sharing space with abortion providers.

  • School victims honored at Billboard Awards; Janet, BTS shine

    School victims honored at Billboard Awards; Janet, BTS shine

    Sunday, May 20 2018 10:51 AM EDT2018-05-20 14:51:24 GMT
    Monday, May 21 2018 12:32 PM EDT2018-05-21 16:32:37 GMT
    (AP Photos/Invision, File). FILE - In a May 7, 2018, file photo, Ariana Grande, left, attends The Metropolitan Museum of Art's Costume Institute benefit gala celebrating the opening of the Heavenly Bodies: Fashion and the Catholic Imagination exhibitio...(AP Photos/Invision, File). FILE - In a May 7, 2018, file photo, Ariana Grande, left, attends The Metropolitan Museum of Art's Costume Institute benefit gala celebrating the opening of the Heavenly Bodies: Fashion and the Catholic Imagination exhibitio...
    After celebrating her 52nd birthday and the 25th anniversary of her groundbreaking "janet.".
    After celebrating her 52nd birthday and the 25th anniversary of her groundbreaking "janet.".
Powered by Frankly
<div id="CDEV-footer"> <div class="top"> <div class="search-box"> <div class="wnSearchBox" id="WNSearchBox-bottom"><form method="get" onsubmit="return wnValidateSearchTerm(this,0)" action="/Global/searchresults.asp"><span>Can't Find Something? </span><input type="text" class="wnQueryText" name="qu" size="20" value="" placeholder="Search For It Here"><input type="submit" class="wnSubmit" value="Search"></form></div> </div> <div class="station-info"> <div class="logo"><img src="http://ftpcontent.worldnow.com/professionalservices/clients/raycom/kswo/2015/images/kswo-footer-logo.png" width="103" height="98" border="0" /></div> <div class="contact"> <div>1401 SE 60th Street<br>Lawton, OK 73501</div> <div>(580) 355-7000</div> </div> <div class="fcc"> <div><a href="https://publicfiles.fcc.gov/tv-profile/kswo-tv">FCC Public File</a></div> <a href="mailto:nbowers@kswo.com">nbowers@kswo.com</a> <div>(580) 355-7000</div> <a href="/link/759231/eeo-report">EEO Report</a> <a href="/story/30715922/closed-captioning">Closed Captioning</a> </div> </div> </div> <div class="footer-main-nav"> <ul class="link-group"> <!--<li><a href="#">News Now Link</a></li> <li><a href="#">News Now Link</a></li> <li><a href="#">News Now Link</a></li> <li><a href="#">News Now Link</a></li>--> </ul> </div> <div class="news-link"> <ul class="link-group"> <li><a href="http://www.ktre.com/category/241993/texas-news-now">Texas News Now</a></li> </ul> </div> <div class="bottom"> <div class="copyrightText"> <a id="wnLogo" href="http://www.worldnow.com"><img src="http://ftpcontent.worldnow.com/wncorp/logos/worldnow_white.png" id="wn"></a> <div class="text"> All content &copy; Copyright 2000 - 2018 Raycom Media. All Rights Reserved. For more information on this site, please read our <a href="/story/8774923/privacy-policy">Privacy Policy</a> and <a href="/story/8775106/terms-of-service">Terms of Service</a>. </div> <div class="clear"></div> </div> </div> </div>