My Superhero. My Son.
Anthony’s Fight with an inexplicable “polio-like” illness- Acute Flaccid Myelitis.
I wanted to get an update out there about what's going on with my son Anthony... It's taken me forever to find the courage to even get an announcement out, but I just wasn't ready. To accept something like this happening to your child, is near impossible. I still haven't accepted it and I don't think I ever will. I don't want my son to just accept it either. I want him to fight.
I want him to have hope...
My four-year-old has been in the hospital for the past 65 days. The most heart wrenching 65 days of my life. You may have heard of it on the news... Acute Flaccid Myelitis. An extremely rare complication from an otherwise common respiratory virus, that's paralyzing (and now killing) children. So far, this year there have been less than 100 AFM cases... My son Anthony is one of those children. He is now paralyzed. The inflammation of the spinal cord damaged his nerves, leaving him paralyzed below the hips. But just like the other thousands of questions we have, nothing is certain, little can be answered, and his future is unknown.
What I can tell you, is that through all of this, Anthony is still Anthony. He's still himself, and I didn't lose him... He is still his happy, goofy, selfless, caring, loving self. He's still him... he's still my son... and for THAT, I am forever grateful! At first I only looked at what he had lost, what I had lost. I went through a period of mourning. Anthony's neurologist at CHOP, Dr. Szperka, had said to me, "you didn't lose him but you will still mourn... You are mourning the death of who your child once was". And I was. It was the worst experience of my life. From being told he might not live, and if he did there was a good chance he would be paralyzed from the neck down. Possibly unable to talk, eat or breathe on his own. I felt like I myself was dying. I wanted to rip my skin off and jump out of my body. It's a feeling like none other... Similar to the feeling I had when my brother passed away. Not the same, but just as horrific. Just as sad. An un calming and inconsolable anger heating me to my core. An unexplainable whirlwind of emotions, followed by an unbearable amount of grief.
I couldn't look at my son without crying. He'd cry, I'd cry... he'd smile, I'd cry, He'd say, "look mom I'm fine", and force a smile on his face as an attempt to ease my sadness... and I'd cry. I had no control over it, I had no control over anything around me. I had literally watched as my son's body had slowly paralyzed before my eyes with not a thing I could do to stop it. Completely helpless. All control gone. I was a wreck. How was this even happening?! You tell yourself this isn’t real, it’s just a cruel nightmare. But I never woke up. 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. That's when guilt struck. Backtracking everywhere we went, everything I did, who we were near, where we ate. Hating myself for not protecting him. If I only would have done things differently a year ago, a month ago, five days ago... the events leading up to this day would be different and he wouldn't have gotten sick. Every wrong decision I made was a series of events that led me to this moment... That led to my child getting sick. It didn't matter what anyone said, this was my fault. I was being punished. I kept yelling at God to take MY legs! Take MY life! Just give my son's back. I pleaded and bargained in every way possible...
I went mad.
I couldn't talk to anyone. Not even my girls. My daughters, Giavanna and Angelina, knew only that their brother was sick and mommy couldn't leave his side. I went 10 days without seeing or speaking to them. The longest I've ever went by far! I couldn't speak the words of Anthony being paralyzed without making it reality. So, I spoke to no one and stayed in full tunnel vision. The first few days felt like weeks. Looking back at those first couple days, I still can't believe how many things had taken place in such a short amount of time. The initial distress stemming from the insane amount of times he was unsuccessfully poked with needles... 14 hours of straight screaming. Poking every inch of him, any vein they thought would suffice. Having six doctors/nurses holding him down while he screamed in pain, begging them to stop hurting him. His weak little body shook while I held him, both of us crying, in between failed attempts at administering the IV. And even through all that, he remained the polite little sweetheart he is. Always politely pleading with them to stop, "please no, please not again”. All while his psychotic mother stomped around cursing and screaming... wanting so badly to take that F’n needle and stab them right in the jugular with it!! He begged me to make them stop. He would hold his trembling hands over his mouth and say, “please no, not again, please mommy” as the tears streamed down his cheeks. And I couldn't even be strong for him. I couldn't watch. When they would begin to hold him down, to restrain him for more IV attempts, he knew what was coming. He would look at me with his tear swollen eyes, reaching out for me to help him. Every bone in my body was telling me to scoop him up and run out of there with him. I had to leave the room while my mother would stay with him each time. I paced the hallways or hid in bathrooms, holding my hands over my ears, still able to hear his screams through the walls. It took 4-6 male nurses and doctors to hold him down every time. And for that, Anthony became known as the Incredible Hulk!
I could have never imagined it getting any worse than those first hours. There couldn't be anything worse than your four- year- old getting tortured by a bunch of strangers... Until, I was told he might not live. You can never prepare yourself for that. Ever. Time seemed to stand still in that moment. Then Anthony started to decline and it would become a race against time... The days blended, my body no longer needed food nor sleep to keep moving. My mom and I researched everything they threw at as, from Guillain-Barre Syndrome to Lyme's disease. Test after test, MRI, CAT scan, LP (spinal tap), blood cultures, etc. In the midst of testing, my mom got a call from my sister's mother-in-law who also works at the pediatrician's office my children go to. I had texted her when Anthony woke up from his nap and was unable to stand. I let her know everything that had happened.
[ Friday, September 16th 2016 - Anthony woke up with a stomach virus, he started wheezing pretty bad so we took him to the local hospital where they then transferred him to St. Christopher's Children's Hospital. He was treated for his breathing and by Sunday we could go home. Anthony was completely back to himself. Happy and healthy.
Tuesday, September 20th - Took him to the pediatrician for his follow up. That morning before leaving for his appointment he had complained about his foot and leg hurting. After examining him and with no signs of injury, I confidently gave Anthony his diagnosis. Growing pains. When my daughters were around three/ four years old they both would complain of leg pain due to what I had come to find out was growing pains. The pediatrician agreed.
Wednesday, September 21st - Onset of Acute Paralysis- The next morning my nephew was over, and while they were playing, my sister seen Anthony fall a couple times. I of course kept missing it, I thought maybe he was just being dramatic while playing. But the day went on and he started getting more and more miserable. When we returned from picking his sisters up from school, he was sobbing and saying his head hurt. I rocked him in my arms and he fell asleep. I laid him in my bed and an hour and a half later he woke up and couldn't stand. Which brings me back to when I texted my sister's mother in law and explained everything that was going on. I let her know the meds he was taking and that I was taking him to the hospital, but wanted to know if she's ever heard of anything like this happening. Really just looking for some reassurance that it was nothing serious. She replied, directing me to go straight to the hospital… The ill feeling in the pit of my stomach unabated.]
When she called my mom, she told her about a notice the Pediatrics office had just received from the Center for Disease Control. Warning physicians to be on the lookout for acute weakness of one or more extremities. Warning that it could be symptoms of a “polio- like” illness affecting children and causing paralysis.... The doctors at St. Christopher’s shrugged it off. They've been most certain Anthony had meningitis, as did I. He had all the symptoms. The severe headache, light sensitivity, pain, etc. Which we discussed could be the possible cause of the weakness due to the swelling of his spinal cord. And would resolve once the swelling subsided. But evidence was still needed in order to make a conclusive diagnosis. After hours of imaging and tests... More poking, more needles (Anthony’s I.V. was removed by a nurse accidentally!), test after test... It was now Friday, it had only been three days. My mom stayed with me and neither of us had slept yet. We were now awaiting the final results of the testing. Once back in the room, I was finally able to relax myself and Anthony was starting to settle. It was just me and my son now. Anthony in his hospital bed and me next to him. Soon after, the Neurologist came in with one of her colleagues. The look on her face was immediately unsettling. I was told to sit so I grabbed my notebook and did as she told. Anthony had in fact had Viral Meningitis. His MRI came back showing inflammation of the spinal cord. But what it also showed were lesions on the grey matter of his spinal cord?? They had a diagnosis... Acute Flaccid Myelitis.
With this new diagnosis, we immediately transferred Anthony to the Children’s Hospital of Philadelphia with the help of Anthony’s pediatrician at Lower Bucks Pediatrics. I promptly began educating myself as much as I could on my son’s new diagnosis of Acute Flaccid Myelitis. The more I read the more intrigued I became. And no wonder? The suspected virus known as enterovirus D68 is the theoretical factor that is leaving children paralyzed. Some of these children left paralyzed from the neck down, leaving them quadriplegic. What’s most puzzling, is the fact that only certain children are affected in such a way. Why it is affecting some children and not all is unknown. The enterovirus D68 is a respiratory virus that affects a substantial number of adults and children worldwide. It is spread like the common cold and more often seen in the fall season. It also presents differently in children than it does in adults. Children can show harsher respiratory symptoms, whereas adults commonly present with mild symptoms or even no symptoms at all. Still unknown is also whether the virus is a direct attack on the spinal cord or post-viral inflammation causing the damage to the nerves leaving these children paralyzed. There is no vaccine and no cure.
Once at CHOP, everything seemed to feel less stressful, it was a much more calming environment and I felt like my voice finally mattered. He started the IVIG (Intravenous Immunoglobulin) treatment in hopes of attenuating the effects of the unconfirmed virus. We were in great hands at CHOP. Even so, Anthony still got worse. We were unable to move him from the curled-up position he was stuck in without him screaming in pain. Physical Therapy came in to help with his ability to move. The Neurology team at CHOP houses some of the only physicians who specialize in Acute Flaccid Myelitis. With expertise in Rare neurological disorders and demyelinating diseases of the central nervous system, we were in the best place to get Anthony the help he needs. The only treatment that has proven effective with AFM patients has been Intense Physical and Occupational Therapy. Nothing else, not even the IVIG has really proven to be helpful in means of recovery. The IVIG is more of a last resort treatment and/or to hopefully stop the progression of symptoms. Prozac is also given for the anti-viral properties it houses, in the case it is in fact a viral infection causing Acute Flaccid Myelitis. In some cases, Plasma Exchange and high doses of Steroids are administered. But usually, the latter two treatments are for more serious cases where the paralysis continues to spread through the body. In severe cases, AFM can cause paralysis from the neck down, affecting the ability to breath, eat, or speak and in a recent case, has caused the death of a 6-year-old little boy. My heart breaks for those families. What my family is going through has been inconceivable, but it could have been worse. My son could have been on a ventilator, feeding tube and unable to speak to me right now. My son could have lost his life… And I cannot begin to imagine that pain!
Watching my son bereft of his ability to walk has been detrimental enough. But eventually, you get up and you keep moving. You find your strength to overcome that debilitating grief and you find the strength to fight! You’ll be surprised at the strength you have when fighting for the life of your child. Looking back, I really don’t know how I did it. I don’t know how I continue to do it. All I know is that I love my kids. It’s the most powerful force that’s ever driven me. From watching a tiny unknown person emerge from your own self, to cheering them on when taking their first steps… Anthony's fight with AFM started 65 days ago and since then it's been a lot of firsts all over again… The first-time Anthony was able be moved without it being excruciating, the first time he could lay flat, the first time I could hold him, the first time he sat up on his own, the first steps he took in his braces, and so on. Every new first is a celebration and he continues to give me a reason to cheer every single day!
Despite everything that’s happened, we still have so much to be Thankful for. But most of all, I am thankful for my amazing kids. I am thankful for life and for all the moments that make life beautiful. The moments that bring you to your feet with tremendous pride! The moments that bring you to tears because you’ve seen hope that tomorrow will be better! The moments that fill your heart with irrepressible joy and gratification amid all your suffering. You can find hope in despair, if you just know where to look. And I look to my son. His courageous achievements brought me back to the light when I was consumed by darkness. Anthony has made a tremendous amount of improvement and continues to amaze me each and every day. He goes to his “therapies” to "work out" and shows me (and all the nurses) how much bigger his muscles are after each session. He has more courage than anyone I’ve ever met! He never gives up and I know he’ll never quit. He works hard all day and pushes himself till it hurts, pushes himself to tears!! He has his team here to help rehabilitate him... To rally behind him. To root for him... He has a brigade of people dedicated to helping him get that one step closer to healing. There are no words to explain how much they mean to me… To our roommates that became our friends and who we now call family, Thank You; for your strength, for your encouragement. To all our wonderful friends here at CHOP, Thank You… from the bottom of our hearts, Thank You!
Anthony has been here with the best of the best, to support and care for him. But he's also had the support of his family. His daddy, his sisters; Giavanna and Angelina, his Mom-mom, Pop-pop, Mimi, Pap-pap, and his Aunts and uncles. And 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!
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!
2016 ended up seeing a total of 138 new cases of AFM (in 37 states) by years’ end.
https://www.cdc.gov/acute-flaccid-myelitis/index.html
https://www.cdc.gov/acute-flaccid-myelitis/afm-surveillance.html
Lisa DeCristoforo
To my Children; Giavanna, Angelina, and Anthony- “Don’t ever stop reaching for the stars! Fight for what you believe in, and never give up hope that you can one day make this world a better place.”
For my
Son,
Anthony David
DeCristoforo
