Medical Breakthroughs Reported by Ivanhoe.com. Click here to go to the homepage.
Be the First to Know. Click here to subscribe FREE!
Search Reports: Use quotation marks around your multi-word search terms in the box below to perform search of Ivanhoe.com.
Advances in health and medicine.Use " marks around search terms
 
What's New
News Flash
Discussion
healthchannelnews
  Alternative Health
Arthritis
Asthma & Allergies
Autism
Breast Cancer
Cancer
Cardiovascular Health
Children's Health
Dental Health
Diabetes
Fertility & Pregnancy
Men's Health
Mental Health
Multiple Sclerosis
Neurological Disorders
Nutrition & Wellness
Orthopedics
Pet Health
Robotics
Seniors' Health
Sports Medicine
Vision
Women's Health
Advances in health and medicine.
Click here to sign up for Medical Alerts!
Click below to access other news from Ivanhoe Broadcast News.
  Click here to get Ivanhoe's Medical Headline RSS feed Click here to listen to Ivanhoe's Medical Podcasts
Useful Links
Play It Again, Please
E-Mail a Friend
Order Books Online
Inside Science
Smart Woman
Advances in health and medicine.
Smart Woman Home
Click here to read the story
Click here to read the story
Click here to read the story
Smart Woman Home
Advances in health and medicine.
Click below to learn about Ivanhoe.
  Awards
About Us
Contact Us
Employment
Feedback
Ivanhoe FAQ
Our TV Partners
Travel Calendar
Advances in health and medicine.
Ivanhoe celebrates 20 years of medical news reporting reaching nearly 80 million TV households each week. Click here to learn more...
Advances in health and medicine.
Marjorie Bekaert Thomas
Publisher/President
Advances in health and medicine.
Advertisement
Children's Health Channel
Reported May 5, 2014

A Mother’s Mission to Save Her Sons

KINGSTON, Mass. (Ivanhoe Newswire) – Two brothers; one uses the stairs, the other a ramp. Both have Duchenne muscular dystrophy. The disease affects mostly boys, and usually killing them before their 21st birthday. However, 12-year-old Max is getting what some are calling a miracle drug. His 15-year-old brother Austin is not allowed to take the drug.

“This is actually completely ludicrous,”Jenn McNary told Ivanhoe.

She’s their mother who is watching one thriving and the other slowly dying.

“I know my son will die if he doesn’t get it,” McNary explained.

What Austin can’t get is a drug called eteplirsen. He wasn’t eligible for the drug trial because he was already in a wheel chair, which is where all Duchenne muscular dystrophy patients end up. He has been in the chair since he was 10-and-a-half.

His brother was headed to the chair too. Young Max was already using a walker, a cane, and occasionally a wheel chair, but he could walk six minutes on his own. That was the test so he got in to the drug trial three years ago. He now gets weekly infusions of the drug.

“We saw his disease progression halted,” McNary said.

Halted, and even reversed.  Max was walking better, running faster, and getting stronger. His weaker brother watched from his wheelchair.

“It is hard because it is there and I can use it but I’m not able to, and Max is on it and he’s getting better,” Austin told Ivanhoe.

“Some boys are running, some boys are playing sports,” Christine McSherry, CEO of Jett Foundation, cofounder of International Duchenne Alliance, Kingston, Mass., told Ivanhoe.

McSherry said never before in the history of this devastating disease has a drug performed so well, ending the inevitable.

“Once those boys decline, they continue to decline, and they go into a power chair,” McSherry explained. “Then their respiratory starts to decline.”

She knows her 18-year-old son Jett is at that point. Walking may be out, but boys in the trial are showing improved pulmonary function.   She is certain getting Jett the drug now would save him.

“There is either this for Jett or nothing else is going to come down the pipeline to save his life, this is it,” McSherry said.

The FDA wants more study data, more information, and more proof. Austin and Jett would need to take eteplirsen for six months at least to get it into their system to begin making the dystrophin protein Duchenne patients lack.

“I’m not scared of death,” Austin said.

At 15, Austin says he is not afraid to die, which could happen while waiting on the FDA to make a move.

“Give my brother the drug now,” Max said.

“We know without this drug boys will die, period,” McSherry explained.

It’s a desperate wait for them all. MORE.

More Information

Click here for additional research on A Mother's Mission to Save Her Sons.

Click here for Ivanhoe's full-length interview with Christine McSherry.

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas, mthomas@ivanhoe.com.

Related Articles in Latest Medical News:

 
 
 Doctor Contact
 
 
 
  Subscribe
Medical Alerts!
 

[ Back to Children's Health Channel Home ]

EDITOR'S CHOICE
Advertisement

Follow Us On:

Click here to go to Ivanhoe's Twitter page Click here to go to Ivanhoe's Facebook page Click here to go to Ivanhoe's YouTube page

Laughter is the Best Medicine! To post a joke or saying, click here!

Home | What's New | News Flash | Search/Latest Medical News | E-Mail Medical Alerts!
Ivanhoe FAQ | Privacy Policy | Our TV Partners | Awards | Useful Links | Play It Again, Please
RSS Feeds | Advertising/Sponsorships | Content Syndication | Reprints

Advances in health and medicine.
webdoctor@ivanhoe.com
Copyright © 2014 Ivanhoe Broadcast News, Inc.
2745 West Fairbanks Avenue
Winter Park, Florida 32789
(407) 740-0789

P.O. Box 865
Orlando, Florida 32802

Premium Content in Latest Medical News Denotes Premium Content in Latest Medical News