As a father, all we really want is the health and safety of our children. Once we become grandfathers, we double down on all that mattered the most to us before. Our hearts swell with pride as we watch our family tree sprout new shoots and bloom with the hopes and prayers that all of our children and grandchildren will someday flower, reaching their full potential. All seems right in the universe until something goes wrong, horribly wrong.

My name is Ed Christner. I am a husband, a father, a veteran, and a grandfather. It was an honor to serve my country in the 101st Airborne during the Gulf War, and I am proud to say, I still support my country, my community, and my fellow veterans to this day. Those morals, values and ethics I learned as a paratrooper in the United States Army taught me to be self-reliant and resilient in the face of adversity. Combat also taught me that I am my brothers and sisters keeper, as they are mine. By nature, I am a person that gives freely of my time, money and energies to support my community, both local and abroad, while rarely asking for help for myself or family. It has been an honor to continue to serve my country and my brothers and sisters.

Today, it is with a tremendous amount of humility and swallowing my pride, that I am reaching out to you, my community, for help. Our granddaughter, Baeha, who is only seven years old, has been diagnosed with a rare brain cyst that will require brain surgery. Her journey has been arduous, with hundreds of seizures, while mom and dad do their best to comfort her. Maybe it’s best if I let Baeha’s mom and dad describe the kind of little girl and granddaughter she is, and what she’s already been through.

Our Journey for Baeha

You couldn’t describe Baeha in one word. She is a daughter, sister, dancer, an athlete, leader, creator, and a best friend. The light she brings to our family is unique, it’s free-spirited, and it’s extremely bright. She cares with her whole heart and never falls short of uplifting the people around her. Whether you are a familiar face or a new hand to shake, she doesn’t hesitate to welcome you with open arms. Her potential in life is endless, and we truly believe she is destined for great things. As a parent, you always hope you can give your children guidance and teach them how to be strong when life presents them with challenges. But, now we have become the students. Her strength and resilience have been nothing short of admirable, and given us a new perspective on life. As she continues on this journey we know life may change, but the journey won’t change her. February 4, 2024. The day everything changed for her little seven year old self. We were out to eat and Baeha had her first seizure but at that time we didn’t know because it didn’t show any of the “typical” seizure symptoms that are commonly known. After that day, she began having 1-2 of these episodes a day. We went to every doctor we could to find answers to what was going on. Why all the sudden is she having these episodes? We had countless blood work done and no one was concerned about imaging. The doctors ordered a thirty-minute EEG which came back normal because of course, there wasn’t any epileptic activity during those thirty minutes. She was only having them 1-2 times a day and they were random. We demanded they do an MRI. The doctors were hesitant to order before we got into a neurologist but finally said okay and ordered an MRI. She was such a trooper and did so well the morning of the MRI and we thought, there’s no way anything will show up on this scan. There’s nothing in there but a normal brain, but we just needed to be sure.

Later that day, we got an email saying her report was finalized. That moment was indescribable...The report wrote, FINDINGS: No comparison studies. There is a large extra-axial CSF like lesion in the left middle cranial fossa without enhancement most suggestive of arachnoid cyst. Measured at 4.5 x 5.5 x 5.5 cm. No associated septations or nodularity. It produces flattening of the adjacent portions of the left temporal lobe and hippocampus as well as inferior aspect of the left frontal lobe. No associated vasogenic edema or gliosis

evident. There is effacement of the left lateral ventricle with minimal shift of midline from left to right of 2 mm. We did all the reading online that we could about brains and arachnoid cysts and seizures. We called every doctor we could just desperately seeking any sort of answers. Which if you’ve dealt with healthcare, you know there’s steps and processing of things. Nothing happens as soon as you want it to. The hurry up and wait game. Days seem like years. We were finally given a referral to a Neurosurgeon at Cincinnati Children’s Hospital. After that day, things just got worse. All of a sudden one day she started having 5-10 seizures a day. Each of them lasting for what seems like forever when you’re watching your child go through something you’ve never seen. All we could do is be there and monitor them and count them and track each and every one of the seizures. Then it progressed to 20+ seizures a day and she then started having seizures during her sleep at night. It went from a few to 10+ seizures in her sleep at night. We started setting up a baby monitor to record her sleep seizures since they were all a little different and we still had no answers to why this was all of the sudden happening out of the blue to a child who really only ever had an ear infection here or there. Healthy as could be on average! The neurologist we had been seeing for a few weeks said let’s put her on Keppra and get these seizures to stop. Well, it only affected her mood and character. She started acting out and just being so unhappy every day. It was heartbreaking. To see your vibrant and happy child go to sad and just miserable every day and still having multiple seizures. She surprisingly never wanted to miss school so we had countless meetings with the teachers and nurse about how to keep her in school but safe. Thank goodness for the amazing staff our school has because not being with her every minute of every day while this is happening is gut wrenching. Her medications also weren’t covered by insurance because she wasn’t diagnosed as epileptic yet. Her one emergency medication was $300+ and the other was $700+. In March we had a twenty-four hour VEEG scheduled in Indianapolis. She had multiple seizures while being monitored. In her sleep, they had to come in and emergency give her a loading dose of Keppra and Klonopin because her seizures in her sleep were lasting over a minute long. From that appointment we were now on two medications to stop the seizures. We found out from that report that the seizures were starting in several areas of the left lobes but rapidly generalizing over the whole brain. We waited weeks for these medications to start working. Yet she kept having multiple seizures a day and still having them in her sleep. Then it got to a point where she was having “cluster seizures”. Meaning, multiple seizures in a short amount of time. We’d stay up all night just to monitor her in her sleep so if we needed to give the emergency medicine and call 911, we could right away. April 14, Our doctor then admitted us to the hospital for an emergency fast medication change. It was awful. She was miserable. We didn’t know if it would work and now we’re putting her on three hardcore medications. Her small seven year old self, being pumped full of all these toxic medications. On the third day of admittance, we finally saw only 1 seizure within twenty-four hours. This is the calmest her brain had been since February. We were released to go home. Seizure free! Fast forward to May, we finally were going to get into Cincinnati Children’s. We met with our neurosurgeon. Our surgeon highly recommends surgery on the cyst. We were told that surgery on the cyst may or may not completely solve the seizures if the seizures and cyst are not related and the only way to know is to go in and find out if the cyst is causing pressure on the rest of the brain. Signing papers for brain surgery on your child, we still can’t let that sink in. It doesn’t seem real. August 19, 2024, two days after her 8th birthday - she will undergo brain surgery. Our next big appointment was with our Neurologist at Cincinnati. We had all the confidence that we’ve heard the worst and the next hardest day will be surgery day. We were wrong. The Neurologist started our appointment by telling us, this appointment will probably not be what you expected. He continued to tell us these medications she’s on is already negatively affecting her body, her bones and her teeth. It’s only been a little over a month since being on all three of these medications. We were also told we have to have another twenty-four hour VEEG to see if these medications are actually stopping the epileptic activity in the brain or if we just aren’t seeing physical symptoms of seizures and they’re still happening. Hopefully, with the results of this scan we will be able to get her off these medications that are causing many negative side effects and onto something that works better. We also had to do more full panels of blood work to check all her levels. After this appointment her newest added diagnosis is Intractable Epilepsy, meaning drug resistant epilepsy. June 6, is the 2nd – twenty-four hour VEEG at Cincinnati. Countless hours have been put in calling doctors, pharmacies, driving out of state for doctors, getting imaging done, going to get blood labs done, going to an advanced ophthalmologist to see if the cyst is causing pressure on her optical nerve and rescheduling everything to get the best possible care for our daughter. Plus, so many more doctors’ appointments that haven’t been talked about here. In all of this, this is just a long story short... Keep us in your prayers, send good vibes, send healing, meditate, vibrate higher for us! ✨ Our journey so far has been the hardest thing we’ve ever been through but it’s still not even close to being over. She’s strong and we’re stronger for her.

In closing, we would like to thank all of you for all of the support as we navigate what’s next for little Baeha, as a family. As the medical bills and ongoing expenses accumulate, we would ask that you please consider helping Baeha with any financial contribution you feel comfortable with. Every bit helps to cover the cost of Baeha’s mounting medical bills, expenses for our family to continue to travel in support of our precious angel, and the aftercare Baeha will certainly need. In return, you have my undying soldier’s loyalty, and a promise that I will continue to serve you, my community, in any way I can. Please pray with us that God will continue to walk with our family in our time of need, and comfort little Baeha as she fights for her life. God bless you all.

Ed Christner

U.S. Army

101st Airborne Division