Help Fund Isabella's Seizure Response Dog

Hello! I’m Isabella and this is part of my rough journey with epilepsy.

(This was written by my mom on January 14, 2020)

So for those of u that do not know what is going on, but know something is, here it is. Last Tuesday morning as Raegan, Isabella and myself were getting ready for school and work, I walked into my bedroom to find Isabella having a grandmal seizure. We called 911 and she was rushed to the ER in Stephenville. They did what they could and sent her home. The doctor did say that he thought it was the onset of epilepsy and gave her a medication to take for seizures. After discussing it, Russell and I decided we didn’t want to start her on a medication without knowing if it was for sure needed. We got the meds anyways with the understanding that if she had another seizure we would start the medication. We really wanted to wait until we saw a neurologist. The wait for the neurologist was at least 2 months. On Saturday Isabella and I were out shopping when she had another seizure, this time it was not a grandmal. I was able to wait it out with her in a dressing room and get her home to watch her. Yesterday, (Monday morning)I got a call from the school nurse that Isabella’s teacher noticed she was shaking really bad and sent her to see her. The nurse told me that Bella was there with her and that she was crying because her ears were ringing really bad and she had a headache. Again, Bella had another seizure, again it was different. Russell and I discussed it and decided to go ahead and take her to Cooks children’s hospital. Let me just say we are very very glad we did. They ended up admitting her and doing an overnight EEG which showing quite a bit of seizure activity. She responded to strobe lights quite a bit. The neurologist came to see us today and is confident after looking over the EEG , her diagnosis is myoclonic epilepsy. Isabella will have things in her life that will have to change, or should I say we all will, but for the most part the Dr. expects her to live a normal life. She will be on some medication that will hopefully keep her from having these seizures. She will be seeing her neurologist regularly. So, we are a little overwhelmed with what we have learned. Obviously none of this was planned and was a total surprise. We are very happy with her doctor and Isabella loves him! That’s a huge yay factor!!

Friday, June 7

Ever since I was diagnosed with epilepsy, I’ve had a number of seizures that have done some pretty severe damage and they’ve caused me to have a few pretty invasive surgeries. One of them broke my nose, knocked out my 3 front teeth, minor concussion, and I had to get stitches in my top lip. Another one of them broke my shoulder and really messed up my rotator cuff, and because of that my shoulder wouldn’t stay in socket. We were in the hospital multiple times a week, sometimes multiple times a day. I had been transferred to many different hospitals and no doctor would touch me because they had never seen anything like what I had going on. But finally we found my surgeon at Scottish Rite in Frisco that was talking to doctors across the country to see if anybody had seen anything like it or even similar, and no one did. But he studied my shoulder very thoroughly and was confident that he could fix it. And a year later, my shoulder was fixed! However, soon after that, my other shoulder started to do the same thing. But because my doctor already knew what was going on with it, he said he could do the surgery. So I had major shoulder reconstruction in both shoulders and was later diagnosed with EDS. In November of 2023 we started to try to wean off of some of the medications I was on because I was on so many at high doses. The first medication I weaned off of went well and there were no issues. The second medication was going well, but towards the end of almost being completely off of it, I started having myoclonic seizures every day, multiple times a day. On May 8th I was admitted into Cooks and had an EEG done and my neurologist said that unfortunately I will be on medication the rest of my life and I will always be at a moderate risk of having seizures. About 2 weeks after the EEG I had an appointment with him, we were going to cancel it but during those 2 weeks, I had 2 more seizures. When we told my doctor that he was absolutely shocked. We told him about one of our dogs just knew that I was going to have an episode both times soon because he would be at my hip the whole day, and then after the episode, he wouldn’t leave my side. My doctor then informed me that he really really wanted and insisted on me getting a seizure response dog. He gave us some foundations to look at to apply for grants, but I would only be receiving $2,500 and the total cost for the dog and the training is $25,000 and I will be traveling to Illinois to pick up my dog when the training is complete and graduation is done. We are doing every fundraiser opportunity we can get to raise this money, a GoFundMe is going to be made for anyone and everyone that can donate, and a Facebook page will be made to get the community involved and get my story out there and reach as many people as possible.

The things that I have discussed on this page are things that have happened over the 4 years of having epilepsy. Thank you so much for taking the time to read this and I hope you can help! Even if it’s not much, every penny counts!