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Jase Coker's Journey

$2,625 of $6,000 goal

Raised by 52 people in 13 months

Jase Coker was born on October 17th, 2014.  At about two months old, Jase started having symptoms including high fevers, rashes, seizures, tremors, migraines, respiratory issues, and others.  Us as parents have been to countless doctors, specialists, hospitals, EEGs, CT Scans, blood work and lab tests to no avail.  The doctors - so far, over the course of 2+ years - have been unable to diagnose Jase. Just when we get close, another new symptom comes up and we head to a different direction.

As a result of these visits and his health issues and condition, Jase's mother, Sarah, had to leave her job and stay with him full time, leaving the sole provider to be his dad, Jon (me).  The travel costs, medical expenses associated with medicine, doctors visits, hospital stays, along with everyday bills has taken a toll on me and my family, including my other two children (5 year old girl and 11 year old boy).  





The frustration of no direction or no answers has drained us physically, emotionally, and mentally.  Jase is now taking Speech Therapy weekly and was told because of his past seizures, he has regressed.  So we are currently having him attend speech to improve his speech and comprehension.

We also have a few more specialist appointments lined up for next couple months hoping to get answers and what to do next.

Jase is a fighter. He has been through numerous tests and scans. He always tries to be a normal two year old and play and be wild. He loves being around his brother and sister and play games with then. But sometimes, his symptoms won't cooperate.  There are days where he wil just love on you and laugh and everything seems fine. But then there are days where he will lay around, lethargic, and quiet will leads into having a flare up and having a fever and you dont know whats wrong because he can't tell you. Each day it seems like we are battling a new symptom or a re-occuring symptom. His favorite is Mickey Mouse Clubhouse and loves to growl like Donald on the show.

My goal is for him to be a happy healthy little boy and live life like any normal kid. 


We're hopeful as each day passes, we get answers or a path toward a diagnosis and a cure.

Any donations will be greatly appreciated. Sometimes in life, you have to swallow your pride and ask for help. Im learning to do so. These four are my life and my goal in life is to protect them and make them proud.

If you want to follow Jase's daily health updates, join his group  at Jase's Soldiers on Facebook. 


Thank You and God Bless!



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Sorry we havent posted much lately. We have been soaking up the sun now that Jase can get outside to swim! He loves the pool. The night's are cooling enough we've been taking him out to run each night. Jase's last flare was a pretty bad one. It took him a week to get over but he's doing great now.

Update on genetics: I spoke with the genetic nurse 2 weeks ago about running the extra test on the gene mutation. We should have confirmation by next week. So the one gene they found mutated was the RNASEH2B. This is associated with AGS2. AGS2 is an autoinflammatory disease. It is the only disease we have even come across that has all the symptoms Jase has. It's extremely rare. After speaking to the nurse, at first she told me he had to have 2 genes effected to have this disease but she said it is possible to only have 1 effected gene. We are further testing to see if he has more than one gene effected. I have spoke to some parents of kids with AGS2 and said Jase has the same symptoms as their kids. Most kids with AGS2 are so severe they don't live more than a couple of years and it's recognized as soon as they are born. This isn't the case with him. We aren't sure if it's the difference of just 1 gene or if it's just a milder case. Still a lot of questions to be asked. We will meet with the genetic specialist to find out all the answers to these questions once this final test is done.

I will update more when we find out more. I hope everyone has a great weekend and thank you so much for all that have continued to follow Jase's progress. Thank you for all the thoughts and prayers. Not sure how we would have made it this far without all of the support of you all!!

Just some pool pictures and him playing at the ballpark in the water.
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New Update: 05/11/2018

Hey guys, sorry I haven't updated lately. Not really any changes. I had to cancel his nuerologist appointment due to weather and then they had to cancel due to an emergency. We should be good to go next week. Also waiting in the doctor to send over bloodwork to further test Jase on the gene disorder.

Jase has had severe anxiety the last few weeks but even worse the last few days. Last night was a 4 hour screaming fest. Today his lymph nodes are huge and he's got mouth sores. So I did some research and anxiety can stim from a flare. I give him prednisone to see if it would help and so far he has been great. Which leads me to think the anxiety is due to inflammation.

Last spring/summer Jase had heat reactions. He wasn't able to be in the heat more than a few minutes before turning red and temperature would rise. He doesn't sweat. I was really hoping that would have cleared up/went away, well unfortunately it hasn't. It seems worse this year. Even with the cooling vest he can't be outside even 5 minutes without reacting. So until the swimming pool opens its hard to do outdoor activities.

It's always been a battle trying to figure out what's wrong and how to fix it. A lot of it is trial and error. Most of the trials makes things worse for him. Trileptal for epilepsy was one of those things. Jase has completely been weened from trileptal for 3 weeks now and he hasn't had any seizures/episodes. We are learning a lot of the episodes he was having was a direct reaction to the medicine. Also some of the anxiety is him still trying to adjust without the medicine because trileptal is also used as a mood stabilizer.

I will post more updates soon. Thank you for all the support!!
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New Update: 04/27/2018

Jase's genetic report come back today. He does have a gene mutation. It's just 1 variant of the gene so they are going to have to do further testing to see if it's causing his symptoms. After researching this disorder it is an autoinflammatory disease. It's extremely rare but it's the only disorder that explains every symptom Jase has. He will need further study on the brain as well. This disease is a neurological, skin, and immune disorder. I won't be posting the disease or the variant until we have further testing as I'm stressing myself out already. I've decided to step away from the research until we know more.

After speaking to the nurse at nuerology this week we had decided it would be best to hold off on Jase's follow up until we received these results as we knew we would be getting them soon. I'll be calling Monday to have him seen and see what direction the nuerologist wants to go. Then follow back up with the geneticist to have these test ran. When she called me this morning and asked if I had any questions I told her no and I would get back to her if we wanted further testing. After reading up on her email and reading on the disease we've decided to go ahead and have the testing done.

Jase has had a pretty good week though. His anxiety and irritability is hit or miss. He has good days and bad days with it. It just seems to be getting worse when it does hit. He is becoming more and more independent! Which is both good and bad. Good for him, bad for me. He's keeping on my toes now! I will keep everyone updated as we get updates from the doctors.
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New Update: 04/20/2018

Jase has been completely weened off of the trileptal. When we returned home from the EMU we were told to start the medicine back and then to ween because he was showing signs of withdrawal. Since being weened Jase isn't having any of his episodes. He has had a few eye tics this past week. I'll be scheduling his annual visit to the eye doctor soon. He follows back up with nuerology next week.

Jase is still having some anxiety but nothing like what it was on the medicine. He's talking a lot clearer and using a lot more words. He can actually tell us what he wants. His tantrums are more typical 3 year old tantrums and not hour long meltdowns. Last night he wanted to pee in the potty! So we are now going to work on potty training again!

Eric had a stomach bug on Monday which caused a flare with Jase. He ran a low grade fever and had swollen, red throat but still was eating and playing. It didn't put him down the way it typically does. Now that the weather is warming up we were really hoping the heat intolerance was gone but it's not. He breaks out in hives within 5 minutes of the heat. We've pulled his cooling vest back out to use before it starts getting too hot.

Overall Jase's symptoms have improved so much. I'm beyond thankful for that and we will still deal with each symptom as we have in the past. May 18th the genetic report should be back. I want to say thank you for all the thoughts and prayers throughout this entire process from all of you guys!

Picture below: Jase refused to go to bed so he tried hiding from me, within a minute he was snoring lol. He has been very stubborn and wants to do what he wants when he wants!
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$2,625 of $6,000 goal

Raised by 52 people in 13 months
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