Our Superhero. Anthony's AFM Fight

"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path."

— AGATHA CHRISTIE

My name is Lisa, I am the mother of three awesome kids! I always wanted to be a mother, but it wasn't until my first born came along that I was able to grip just how truly astonishing motherhood would be. 5 years (and two more kids) later, my world was complete. Giavanna, Angelina, and Anthony... the loves of my life. I was lucky enough that only a few stitches and minor hospital visits (generally due to utter paranoia) was the extent of their past health afflictions. I never knew the pain, heartache and despair that accompanied having a sick child. Until September 15th, 2016 when, without warning, my world would come crumbling down. A mysterious “polio-like” virus inhabited my son’s central nervous system, causing damage to his nerves and paralyzing his helpless body inch by inch. Since my son got sick, it's been an extreme hardship on us financially. I have been adamant about not asking for help, but when it comes to my children, I would do anything! I'd swim across oceans, climb the highest mountains, and sacrifice my life for them... in a heartbeat!

We were recently invited by The Transverse Myelitis Association to attend a 5 day retreat at The Camp for Courageous kids in Kentucky. Where Anthony could spend 5 days with kids who have similar diagnoses and just be a normal 5-year-old little boy! Although I didn’t have the funds, I wasn’t going to let Anthony and his sister’s miss the opportunity to take a break from the craziness that has been their lives since Anthony got sick. So I borrowed the money, rented a car (since mine is broken) and drove the 16 hours to Scottsville, Kentucky with three kids in the back seat. And it was worth every mile driven and every penny borrowed!! The day after we returned home, I was on the phone scheduling a surgery that I had only heard was possible two weeks before while Anthony and I were in Baltimore for an in patient evaluation at the Kennedy Krieger Institute. This surgery is completely new. In fact, Anthony will be the second person in history to ever have it done. His time limit for having it done is ending which is why we had to schedule the surgery just days before he will be on the operating table. On  August 3rd, 2017,  Anthony will be undergoing a 13 hour surgery. An extremely complex surgery that will involve a team of surgeons who will be pushing limits and defying odds to give my son a chance of a lifetime... The surgery is in NO way an instant fix. The risks are high but the reward would be even greater. It is an extremely tough decision but I pray everyday I am making the right one. The odds that the surgery will be a success are not high. But people defy odds all the time, and I believe Anthony will be one of them. I have to believe it! He's been given an opportunity of a lifetime, an opportunity that wasn't even possible just weeks ago. I still haven't bought the plane tickets, because the funds are non-existent. But he will get there, and I WILL make sure of it. I don't care what I have to do to ensure it happens. Which is why I'm reaching out for help. Anthony will also need continued aggressive therapy every day in order to ensure the best outcome for him,... whether the surgery is successful or not. There’s also the equipment for his rehabilitation, the equipment he needs everyday to get around, the doctors, the procedures, and I won’t even get into the medical bills. But all that matters right now, is that I’m able to make this opportunity happen for Anthony. Even if it is just a chance. It's a chance that he will walk again. In a month from now, it will no longer be possible and I will have missed this one opportunity to change his life. Anthony's amount of recovery will be on ME, on MY actions as a mother. And I refuse to fail him!

Anthony’s heart is tremendous. He would do anything to make the ones around him happy. He truly is the sweetest boy I've ever known. He didn't deserve this. He didn’t deserve a second of this. But he's never once complained. He refuses to show me when he's in pain because he's too afraid of making me worried.. or as he would say, "hurting [my] heart", so instead he holds all his pain in! What 5-year-old does that?! And because of this (and the fact that i'm his mother) I've learned to read his body language to determine whether or not he's in pain.  He'll give anybody everything and anything he has without them having to ask. His sisters are his loves! He calls them, his girls,.. and that they are! I can't even say that he’s like this because he got sick. He's been this way since he was a babe. Although, I do believe everything that has happened to him has, without a doubt, humbled him and made his curiosity limitless!  And I  love that about him! He'll say "excuse me" 20 times in a single conversation. His biggest encouragement or incentive when doing therapy is simply the pride he sees in our eyes when he is doing it. And when he's finished the hours of painful, utterly exhausting therapy, his first question to me is if he's made me proud…  And proud I am! More than he will ever know! This 5-year-old boy has changed the way I look at life. He's changed me in so many ways. He’s opened my eyes to so much wonderful despite all the heartache. And when times are tougher than I think bearable, I look to him; I pick up my feet, I find strength I didn’t think possible, and I keep fighting. How can I give up when he fights so hard without complaint? I can't. And I NEVER will!

Thank you from the bottom of our hearts! Truely! Even if it was to just read this. One thing I ask of everyone is that you please keep my son, Anthony David DeCristoforo, in your prayers. His road to recovery will be long, it will be hard... But I know one day I will watch with tremendous pride and triumph, as my son walks for the first time... again ♡

https://youtu.be/Hzy6rgLu7iM

"...My completely healthy, athletic, energetic, beautiful baby boy had the innocence of his childhood ripped from him with no rhyme or reason as to why. His life was caught in the grasps of this wicked illness... taking its course through his body while leaving a wake of destruction in its path...."

Click Here for the full story
https://docs.google.com/document/d/1egdavxDSDjM7X5ofAvrRIfONovJqztNUoQYGE4kP9gY/pub 

... To read Anthony's Story through his mommy's eyes, click the link above. 
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22270216_1501093[phone redacted]_funddescription.jpgAnthony was featured on the front of the Bucks County Courier Times. To read the articles, click the links below..

http://www.buckscountycouriertimes.com/news/local/virus-leaves-children-partially-paralyzed/image_125c92ba-513c-11e7-8b3c-378680a02d7e.html?utm_medium=social&utm_source=email&utm_campaign=user-share

http://www.buckscountycouriertimes.com/news/local/learning-to-stand-after-mysterious-illness/image_164d25e2-513c-11e7-843a-d303f0603d02.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share

http://www.buckscountycouriertimes.com/news/local/virus-leaves-children-partially-paralyzed/image_125c92ba-513c-11e7-8b3c-378680a02d7e.html?utm_medium=social&utm_source=facebook&utm_campaign=user-share

22270216_1501112[phone redacted]_funddescription.jpg"...he's also had me… His mom- his biggest fan! Here to cheer and scream, and clap and cry with every new obstacle he crushes! To lift him up when he falls down, and wipe his tears when he breaks down. To be his coach. His advocate. To fight for him... The way he fights every single day. Only caring about making the people he loves proud. Never once complaining about not being able to walk or do the things he was able to do just a brief time ago… The only thing he’s ever asked of us, “please teach me how to walk again?” And with that heart wrenching request, we gave him a promise...

You WILL walk again!"
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There are still so many unanswered questions as to why my child must endure a lifetime of hardship because of this unknown illness known as Acute Flaccid Myelitis. But I won’t stop until I have answers… And neither should any other parent. This is not going to just go away. It will continue to tear apart families no matter your ethnicity or the religion you practice. This virus doesn’t discriminate between the good or the bad, the wealthy or the poor, nor does it care which side of the world you live on. We need to bring awareness to what is happening and we must be vigilant! When there is something attacking the most innocent of innocent; our children… something MUST be done to stop it!

In 2016 there were 138 new cases of AFM (in 37 states) that were reported to the CDC by years’ end... with many, many more unreported and misdiagnosed cases (and fatalities) not included in that total...
https://www.cdc.gov/acute-flaccid-myelitis/index.html
https://www.cdc.gov/acute-flaccid-myelitis/afm-surveillance.html

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Organizer

Lisa Michelle DeCristoforo 
Organizer
Langhorne, PA
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