This is John Anthony:
He looks like a normal 9-year old boy. Unfortunately he is not.
According to his mom:
… He has been on a long journey. He has been misdiagnosed several times. Currently a skin biopsy showed he has SCAD which is an inborn error of metabolism. a metabolic disorder. His current geneticist thinks he also has glycogen storage disease type O and 2 of his specialists thinks he has Mito. We are currently waiting on whole genome exome sequencing results to come back. Its where they look at thousands of genes and also the parents to see what is going on and hopefully get the complete diagnoses once and for all. He has been in the hospital more times than i can count. He can go from doing great to really sick low blood sugar / metabolic acidosis in a minute. He has a g tube and gets formula all night through it. It helps him gain wt and keeps his blood sugar up. His disease caused failure to thrive among many other things. He is a wonderful little boy and very active loving sports when he is able too. Sometimes he is even in a wheelchair due to pain/dystonia/weakness. Thank goodness for now it is sparingly. He sees neuro, genetics, gi, pediatrics, pediatric surgeon, endo, and a nutritionist. We are trying to save money so he can see a mito specialist. In ga there are only 2. one takes private insurance and the other one does not accept insurance. Dr Kendall is world known. And is a top specialist. Too bad it takes moving mountains to see her. A new pt visit costs 5 hundred. Which is cheaper than the other doctor. sorry. not to get off on a rant Anyways. JA never cries for blood draws or ivs. He watches and shows them where to stick him. He is a brave warrior. He lover life and seldom complains. He lives with chronic pain from his disease but only complains if its unbearable. He love art. And actually is a very good artist. He lover watching scary movies too. He lover music and he loves God Oh and he loves the Georgia Bulldogs which i know NewYork is in the SEC , right? so we are rivals lol
And unfortunately his disease makes him happy and playing like a normal boy one minute to very ill and weak the next. He just now started his heart racing and nauseas…
I won’t go on anymore but you can see that it brings tears to my eyes.
Just Friday night after months of waiting, John Anthony was paired with me as my “running buddy.”
Here are some of our messages from FB from just Saturday:
Me: I am running a 5k today for john.Mom: Hey Darlene! Awesome. JohnAnthony says COOL! Good Luck and YOU got this!Mom: Good Morning Miss Darlene!! JohnAnthony and I want to tell you Good Luck today. Its cold out there even here in South Georgia JA says you got this! He sends high fives *bam*bam* and a hug ((♥))Me: Tell I won a medal for himMom: Yay! Thats awesome If you can take a picture and post it to my wall so i can show him. He is beyond exited! We are so blessed. And i know the Lord will bless you for being JohnAnthonys runner!Me: I will for sure. He brought me luck. I hope to do the same for him.Mom: Oh. pm me your address. JA might want to send you a drawing JA is going to do for youMom: Hey everyone! We are proud to announce that JohnAnthony got matched with a runner in the I run for Michael group! We are so exited. This is an awesome group that is there to match special kids/adults to a runner buddy. They encourage each other, pray for each other and the runner runs for the buddy. We got matched last night. Its an amazing group of amazing people who encourage each other. Lets face it we could all use some encouragement. Especially those of us on a special journey. And there are currently 1,7OO runners still waiting to get matched wit a super awesome buddy. Yall should definately do it. JohnAnthonys runner is Darlene in New York and she already ran a 5k this am and won a medal for JA! Woo Hoo!Mom: We are blessed. You are already such an encouragement to JA too.