IMPORTANT IMPORTANT: Save a Life be a hero

I put up a post asking people to pitch me to become writers on my site. I received this letter asking me to help. I couldn’t imagine not helping. I promised to get the information out there. I promised to ask all of you to share this post. I figured maybe just maybe we could reach the people who could help this mom. How could you watch one child thrive while the other suffers knowing there is something out there that could help. I hope we can make a difference.

Their story written by their mom  Jennifer

  Austin was born a healthy happy baby, He has grown up independent, inquisitive and with an amazing sense of humor. His greatest love is animals, all kinds and he is careful not to discriminate against any type just because they have a bad reputation. He is memorable, his laugh infectious, always the center of attention (in a good way) Austin is resilient, and brave, and an amazing friend. He adores his baby sister, and fights with his brothers. In his bedroom you will find collections of everything, postcards, pokemon cards, erasers and even  giant ball of masking tape, because he is a quirky kiddo. He used to walk on his own, but now uses a wheelchair to get around.Austin is 13, loves calamari, hates beans and is dying of duchenne muscular dystrophy.
Max was born deaf, but over came that with nothing short of a miracle recovery. He is a huge personality in a tiny body. Max is obsessed with monkeys, the color orange, and would eat salad 3 meals a day if i let him. He struggles in school, but laughs anyway. The kid can take a needle or surgery like nobody i know, but he cries if he has a tag in his shirt. For the past 50 weeks my son max has been taking a lifesaving drug infusion every weak, and is able to run, jump and play like never before, even though he has duchenne muscular dystrophy.
www.cureduchenne.org/
These are my sons, and i love them and their siblings more than anything else in this world. i am their mama, their protecter, i am supposed to keep them safe and take care of them. Last august Max was invited to participate in a clinical trial for the terminal illness Duchenne Muscular Dystrophy. He and Austin both have the same genetic mutation, but the trial was only for boys who are still able to complete a walk test (to gauge how well the drug works) . We assumed that if the drug worked, and there were no side effects then we could get the drug to Austin vis Expanded use program through the FDA. Here we are at week 50 and the drug has been proven effective, and safe, however my requests to the drug company Sarepta www.sareptatherapeutics.com/ have been met with rather placating comments, asking me to be patient . Anyone with a child with a terminal illness understands me when i say patience is certainly not in our vocabulary, persistence ? yes i have that. patience? not so much . it is hard to have patience when your son is losing strength every day, every minute really. Its hard when i know , reasonably , that the drug cannot reverse the damage done to Austin’s muscle , so it is important to get it into him as soon as possible to slow or even stop the progression of the disease. Yes, my boy is in a wheelchair, but he values the ability he has. He can still pet his dog, eat by himself, text a friend. he can swallow, he can breathe, HIS HEART IS STILL BEATING all of which can, and will be taken from him if we sit and wait. Pardon my urgency, you see this is an emergency, its just a rather quiet one, and i refuse to watch my son die while this drug exists, and his own brother is getting it every week.
What do I want YOU to do? What CAN you do? We will need people with all different skill sets in our fight.
*writers, photographers, bloggers, facebookers , you-tube artists we need AWARENESS we need people telling our story and documenting it , writing to legislators and media outlets telling them that THIS boys life is important and that this situation should not be allowed to happen, that a mom should not have to watch one son die and one get better because of money or logistics. share the story, that is all.
Comment below that you have share… lets use socially media to raise awareness…


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Comments

  1. says

    That is such a touching story. My 6 year old son is hearing impaired and has severe low muscle tone throughout his body. I would love to share this story…thanks for sharing it with us!

  2. Samantha says

    Austin is a great child in fact he is my 13yr sons only friend. Please someone help. Austin means so much to so many people.

  3. linda armstrong says

    Any American citizen with Duchenne Muscular Dystrophy should be able to get treatment in the United States of America. Drug and insurance companies are the largest part of the problem with making help available to the general American public. It does not matter how a child dies,no parent should have to bury a child. I’ve burried 1 child, so I know how it feels.

  4. Laurie Webb says

    Austin and Max are my grandsons. My daughter is an incredible advocate, supporter and proactive mom, but needs your help as she fights for Austin’s life. To see Max gaining strength and thriving is truly a blessing, made bittersweet by seeing Austin’s health decline. Providing the same drug to Austin is the only humane, moral, compassionate response that we should be hearing from Sarepta.

  5. says

    I’ll share this on twitter.

    My 5-year-old nephew suffers from Duchennes as well, diagnozed 1,5 years ago. In Sweden, the first medicine is planned to be released in about 6 months, but the clinical test results have
    not yet been released. The medicine is produced by GlaxoSmithKline together with another
    company, don’t remember the name.

    I’m pitching in as much as I can, selling my handmade children’s appeareal and donating parts to the Swedish fund. I’m also selling stuff my friends donated at a flea market (loppis4life.blogspot.com) and attending a Run for life race.

    I feel for you, having two boys diagnozed, there’s no way to imagine the feelings you have to cope with everyday.

    I hope for the best for all of the DMD-boys!

    • jenn mcnary says

      thank you all for your work. our story will be on WCAX burlington, tonight or thursday night, and on the website after. your voice is important!

  6. John says

    Glad your son is doing better! I would suggest making a petition on change.org and getting as many signatures as you can. The more voices you have behind you, the better. Also, I think you should provide a little more detail how or how much your son improved to really get your message across. It’s a very powerful story and I’m sure other parents would like to know how your son improved so they can hope one day to have the same.

  7. FA says

    You guys need to petition the FDA and your local Congressmen. Emailing and contacting Sarepta Therapeutics is a waste of time because obviously the company wants FDA approval as soon as possible, it’s their main drug in their pipeline, the biggest driver for the company.

    The delay choke-point right now is the FDA approval. FDA may consider fast-tracking the drug, so you have to FOCUS YOUR EFFORTS on the FDA not the company itself (which is doing everything it can to fast-track the drug and get it out ASAP). Don’t waste Sarepta Therapeutic’s time.

  8. Beau says

    Hang in there Austin. Unfortunately, Sarepta cannot yet manufacture enough drug to get it to the kids who need it. Even if they could, the FDA has not approved the drug, so they would not be allowed to give it to all the kids who need it anyway. Sarepta is trying as best as it can to make the drug available as soon as possible. I agree with FA. We must focus our efforts on the FDA. They alone have the power to make this drug available to those who need it.

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