Today my son will have brain surgery.
I stare at that sentence in disbelief. Did I really just type that?
Brain surgery is big. Brain surgery is hard. It’s the yardstick by which all other things are measured. When something is easy, they say, “it’s not brain surgery.”
But this IS brain surgery. And it’s my son. My three-year-old son, Charlie.
Charlie was diagnosed with epilepsy March of 2012. Every day for the past two years, my son has suffered from up to 15 seizures a day. That’s tough on anyone, but tougher still on an adventurous three-year-old who doesn’t understand what is happening or why he shouldn’t climb on the dining room table.
Most epileptic seizures can be controlled by medication but Charlie’s could not. We finally learned why last month.
Charlie suffers from a condition called Rasmussen’s Encephalitis, a rare inflammatory disease that only affects a handful of people in the U.S. every year. It causes seizures, developmental delays, and brain damage.
This disease has robbed my son of an ordinary life.
This disease has robbed my son of clear communication.
This disease has robbed us of our son for two years.
Enough.
It ends today.
Today my son will have brain surgery.
The support has been humbling and overwhelming. Charlie has been on the receiving end of prayers and financial support from friends, family, and people we’ve never even met. Many of you have given anonymously. I respect that. My only regret is that we won’t be able to thank you personally. So this may be my only chance…
- If you prayed, thank you.
- If you gave, thank you.
- If you shared Charlie’s story, thank you.
- If you wrote a note, gave a hug, offered a shoulder to cry on, or asked how you can help, thank you.
You are Charlie’s Angels. To say we couldn’t have done it without you is a gross understatement. We simply wouldn’t be here without you. I can’t emphasize that enough. You have given my family the strength to make it this far. And your love will sustain us as we continue this journey.
Today is a turning point. Everything changes. While we hope the seizures cease, this surgery will have lasting physical effects that Charlie will have to live with for the rest of his life. They are a necessary evil for us to get our son back. I only hope, one day, he understands that.
Charlie turns four years old two weeks from today. My prayer is that he is able to celebrate his birthday away from the hospital and seizure-free.
But we will have time to celebrate later.
Today my son will have brain surgery.
If you would like to make a financial donation to help Ryan and his family with Charlie’s medical costs, click here.
You are all in my prayers throughout the day.
We’ve seen and heard you at church. Although we don’t know you personally our hearts go out to you guys as parents. Our sons hold our hearts, as we know your Charlie holds yours…. We lift him up to the throne room of grace and pray for him this day. May all that needs to be accomplished be as it should be..in the mighty name of Jesus. We pray for your peace as well. Bless you, for it is only…
In Christ Alone
Ryan, Julie, Judy, Paula, Reg, Riley and others. Please know you are being lifted up today in our prayers.
Prayers for healing
Prayers for Peace in your hearts
Prayers for courage
May God’s Grace cover you all today like warm honey creeping into all the crevices of your bodies and minds giving you peace that passes all understanding. God Bless You all.
Your article made me cry. The good kind of cry when there’s been suffering but the light at the end of that is in reach. Julie and I were highschool classmates but I am more familiar with your family through your remarkable mother. I worked with Paula. ‘Best of luck’ is the under statement of the year. I will be praying and asking everyone I know to do the same.
All things are possible through our Lord, Jesus Christ. In His name, I pray for little Charlie and your entire family. I hope that you are blessed with merciful healing. The Lord will hold you in His mighty hands.
Our daughter, Bailey, watched Charlie at the March Date Night and come home telling about his seizures. She thought he was the cutest, sweetest little guy! We will most definitely be praying for you all today and in the days to come. I pray the presence and peace of God wraps around you guys in an amazing way today!
Please know that so many are praying for your sweet little Charlie, his doctors and each one of you. May he be your source of all healing and comfort. God bless you.
My prayers are with you, your family and the surgeon working on your little boy. May God guide the instruments to make this successful.
You are in my thoughts and prayers! My daughter has RE, diagnoised three days before her 21st birthday. We are a small family, us RE folk, and must stick together. Here’s to a marvelous outcome and easy recovery from surgery for your beautiful son. Thank you for being there for your child!
Our messianic congregation in Russellville, ar is praying for you all. Last night our regional ladies meeting did too, so there are now three more congregations lifting you and Charlie in prayer. God is good, all the time!
Beth- sister of Danielle Barter
Tim – My daughter is 18 and just graduated from high school this past Sunday. She, too, has suffered from a seizure disorder since she was about 15-months old. She has had two major brain surgeries (not including the surgeries to place feeds to “map” her brain) and has had three other surgeries to place and re-place a Vagal Nerve Stimulator.
I tell you this to encourage you. My daughter has been seizure free for nearly a year and is looking forward to being able to start driving later this year. We are thankful that eventhough she went through high school labeled as a “special needs” student, she doesn’t have a ceiling on her learning and growth.
I pray for you and your family that you’ll have the success we have had and that your little one recovers and leads a full life like my daughter.
“God bless you and keep you. God smile on you and gift you. God look you in the face and make you prosper.” Numbers 6: 24-26
I am praying for Charlie and your family, as you are living every parent’s nightmare. Praying hard for a happy ending, God is powerful!
Wow. Prayers have been offered. Best of Luck, God Bless and be with you, Charlie and your whole family today and in the coming weeks! Here’s to success and a new beginning!!!
The people of the First United Methodist Church of Carterville are joined in prayer for Charlie and you. And, we are looking at doing more…
May God strengthen you all!
Prayers for your son and your family. We have almost been to this point with my grand daughter but they can’t find the spots the seizures are firing from. We can relate….I have seen so many kids that this has been the miriicle cure. Praying it will work for Charlie .
Charlie was my buddy in tiger paws usually when he seen me he came running and he just brightened up my whole day. my prayers are with him and his family. Good Luck Charlie<3
So glad that this part is over and he is on the road to recovery. Our hearts are with you all the way! Love you guys!
Praying for Charlie’s speedy recovery. I don’t know the whole story but I know a little girl who is now four who had infantile spasms, a seizure disorder, following a brain aneurysm when she was just months old . She had a hemispherectomy two years ago and is doing fantastic. The surgery stopped her seizures and her development (which had pretty much stopped) has resumed. She was previously paralyzed on her right side and is now able to walk and use her right arm. She has a ways to go on her hand but they are working on it. Her speech is a little hard to understand but she is able to talk and understand others and is working on her speech. She even knows how to count to ten in Spanish thanks to Dora the Explorer! Please be encouraged by this little girl’s story through the rough days ahead. I will continue to pray that Charlie’s recovery will be even more miraculous.
I am saying a prayer for all of you! My grandson had a right hemispherectomy on 5/13/2013 at the age of 11 months. He is doing amazing. He is seizure free and medication free! He has been walking for two months and is a very happy kid who loves to play with his cars and Legos. I am positive that your son will have a fantastic life ahead of him just as our Caden will.