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.”
I wanted to share about what’s going on with my son Anthony…To accept something like this happening to your child is near impossible. I don’t want my son to just accept it either. I want him to fight. I want him to have hope…
Back in 2017, my four year-old son was 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 Children’s Hospital of Philadelphia (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.
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.
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 disorder 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.
Family and friends of Anthony DeCristoforo are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Anthony has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
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In honor of Anthony D. DeCristoforo
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