Help Ashton with his medical expenses.

Hello,
       This is hard for us to ask for help but we are truly in need of help to be able to help Ashton become healthy and live to see many more days. I am raising funds to help with the extra medical funds that we are struggling as a family to stay afloat with. We need help to be able to afford Ashton's monthly insurance costs, medicines, emergency medicine, and travel expenses for his doctors in and out of state to get him the best possible care to figure out what type of epilepsy this is exactly, what caused it, and how to treat it.
            This is so that he can ultimately stay alive, but live as close to a normal life as possible and hopefully one day be able to do things like play sports, ride a bike again, drive a car, have a job, and move out on his own to start a family of his own, just like everyone wants to as they transition into adulthood.

            This all started a few months before his 17th birthday back in June 2021. Life seemed great we adopted his childhood best friend in May 2021 from the foster care system and they were brothers as they always dreamed by chance and circumstance. Then we went on a family vacation to celebrate in the middle of June to Florida. Then as soon as we got back Ashton got sick and we went to the hospital where we found out he had viral meningitis and had a tonic clonic (grandmal) seizure for the first time. He almost died but the doctors saved him, thankfully we were there when it first happened. His brain tells his lungs to stop breathing when he has these types on seizures. At first they thought maybe the meningitis caused it until they seen his EEG and realized he does have epilepsy, but the meningitis brought it to the surface. Epilepsy runs in our family and my husband's aunt died from this disorder in her early 20's from it. We went home 4 days later on antiseizure medication. He kept feeling weird everyday, waking up puking, stomach hurting, and having auras. The neurologist said this was part of his epilepsy and in fact those were seizures too.

         Ashton was diagnosed with temporal focal epilepsy with complex partial seizures. We didn't have health insurance at the time due to the cost of it being $1,000 monthly through my husband's work, for family insurance. But when this all happened we realized we didn't have a choice so Ashton could see the neurologist as often as needed and recieve the testing he needed to continue to figure out this new health issue. When open enrollment happened we added him and the insurance kicked in on January 1st 2022.

          In October 2021, while we waited for this to kick in, Ashton had 13 seizures in one day and they were mainly where he would sit up and stiffen out one arm, sometimes talk during it and sometimes not be able to, stare off and sometimes his eyes would roll back into his head, fidget with his hands and fingers, legs would shake at times, lay back down back and forth and sometimes try to stand up, and make smacking noises with his lips and tounge. Then the big one came about 9pm, he had another tonic clonic seizure while he was going to the bathroom. I knew he had been in there about 7 or 8 minutes so I called out his name to check on him and then we heard a loud boom, another boom immediately after, and then multiple booms against the bathroom door. We jumped off the couch and ran to bathroom as we knew what was happening. The door was locked and my husband got it open, but Ashton was against the door and tub on the floor seizing and he is a big boy, plus our bathroom is small. We maneuvered the door barely for my husband to squeeze through and pick up our son, who is almost as big as his dad. He picked Ashton up in his arms like a baby as Ashton was having convulsions, so that I could open the door all they way. He laid Ashton back on the floor to be able to safely finish seizing with an open wound on the back of his head and blood everywhere. Next our worst nightmare happened again, only we were at home instead of the hospital.
           Ashton stopped breathing again and was purple, his body stopped having convulsions and was barely trembling. My husband looked at me since I had seen this before at the hospital and I am cpr trained and he said with tears flowing down his face "what do we do, Ashton isn't breathing". I looked at him with complete panic inside and somehow my mind went back to what happened in the hospital that I had witnessed the doctors do, in my moment of mental clarity and I said " turn him on his side". I turned around and told our new adopted son "call 911", who was also in shock seeing such a horrible site. I then ran to try and grab his emergency medicine, that was then was a vile that I had to extract the medication and then remove the needle tip to put a soft nostril tip on to be able to administer in Ashton's nose. I couldn't do it, I was shaking so bad, I only got air, so I threw it down to run back and administer cpr. From what felt like an hour was only maybe 60 seconds, I got into the bathroom to give cpr. Thankfully my advice of turning him on his side, Ashton was just starting to breathe again and then had started convulsions again, back into his seizure. He seized for about 10 minutes.
             We went to Riley Childrens Hospital and stayed only 24 hours before we went home, as this is our new normal and what we have to deal with. Ashton received 6 staples in his head for his wound and we started a second daily antiseizure medication. The new medication had some adverse affects that made him feel worse, so a week later the doctor switched it to another medication. He still had non convulsive seizures everyday. The doctors have upped the dose of both daily meds, but he still hasn't stopped having multiple seizures everyday. We haven't had another tonic clonic seizure, which the doctors say are very life threatening since his brain tells his lungs to stop working and it isn't him choking on anything.

           We visited the neurologist in January 2022 and now realize he has a heart issue as well. His apple watch recorded Ashton's heart going below 45 bpm for 10 minutes at least, multiple times a night. Ashton's heart rate goes really high during seizures as well. I have caught Ashton even having seizures in his sleep, sitting up and stiffening and making those smacking noises with his lips and tongue. So, we are going to a Cardiologist as well. Ashton's epilepsy is very complex and not controlled by medicine, so his neurologist thinks our idea of second and third opinion, are a great idea. So we will be seeing the Mayo Clinic in the spring, to have their neurology team evaluate Ashton and all of his epilepsy and heart issues after we get more tests done. We are also being told that brain surgery may be a good option for Ashton since medication isn't helping and the keto diet treatment won't work for his type of epilepsy. We still have to research the other hospital we would like to have our 3rd opinion for Ashton, which will likely be the best neurological surgeon in the country that we can find, so Ashton is in the best hands. We haven't decided where we will have to travel yet.
             Ashton has lost over 30 pounds in the last 6 weeks due to not being able to eat much or hold food down from stomach issues. We aren't sure if it is related to the epilepsy or not, but we are being sent to a GI doctor now too. The tests he has coming up are a brain MRI, a 72 hour video EEG, genealogical testing for a full epileptic panel, EKG, and a heart echo test (ultrasound of the heart). His neurologist has referred Ashton to the Make a Wish program as well since this is such a dire situation, and we don't know what Ashton's future is, especially since at this point looks a little grim.

           We are going through so much as a family and are struggling to keep up with bills and all these unexpected medical expenses. I'm not even sure what the future holds for my job, since Ashton can't ever be alone and currently my work has been amazing to allow me to work from home since the end of October. We are asking for any type of donation big or small to this medical fund to help us through some of our current and future hardships we have to get Ashton better and hopefully help him live a long and healthy life.

Update 06/30/2022:   Ashton is now a Mayo Clinic Patient in Rochester, MN.  We have been there 2 times since May 2022. He’s had the following tests- two 5 Tesla MRI’s/PET Scans, one 7 Tesla MRI, 4day video EEG (they seen multiple seizures including 4 tonic clinic seizures), and a MEG scan. He now has had to switch his medicine again because of more daily seizures and 1 tonic clinic in a Denny’s bathroom where he busted his head open again same spot as Octobers seizure and got 6 more staples. The doctors say his threshold has lowered and he will have more and more seizures as this is very uncontrollable with ent meds.  What’s next is a 1-4week stay in the Mayo hospital in Minnesota to do a brain surgery to implant a device for a stereo EEG so they can see the inner/deeper parts of the brain during a seizure because that’s where they think this starts every time.

Make a wish has got further in their process and is almost ready to start planning his wish anytime now. They said we will travel in the fall to California and try to set up a meeting/hangout with Snoop Dogg, which is what Ashton wished for. If anyone has frequent flyer miles or enterprise rent a car points they would like to donate that would be greatly appreciated to help with the cost of his wish. Also, we have already depleted the donation funds from the first two trips to Mayo. We need help getting funds to be able to travel for his next trip to Mayo Clinic and to cover bills for our week trip with make a wish since we have used up our vacation time already on the trips and doctors appointments we have already had to do.

We are also doing a benefit Walk/Run/Ride for raising more funds on Saturday August 6, 2022 at the Greenwood VFW Post 5864 at 8:30am. Cost is $10per person but you can donate more if you would like that day. There will be hot dogs and chips after the event for anyone involved plus a bracelet that says “Epilepsy Awareness/#AshtonStrong on it as a thank you to the donations. Please come out and join us!

 We want to thank everyone who has read this long post and donated to our fund for Ashton, donated to the Epilepsy Foundation, and shared this page for us. Lastly, we ask you to keep Ashton and our family in your prayers.

 

 

Thank you,

The Shirrell Family

#AshtonStrong 
#EPILEPSYAWARENESS 
#InThisFamilyNoOneFightsAlone