Daimeon

Hi, my name is Kristyn and Daimeon is my 4 year old son. On December 27, 2022 he was diagnosed with generalized epilepsy. Since his diagnosis we have come to learn that he has EMAS, which is a rare and pretty hard to treat form of epilepsy. He has been on multiple medications and we are getting closer to our goal of having less than 20 seizures a day and then hoping to get to have some days seizure free. Currently he is on 3 anti-epileptics and takes a few other medications from the side effects of those 3 medications. He has been hospitalized every 3-5 weeks for multiple days since December, as a single parent this has created a huge financial strain on our household. Our financial situation was already rocky as I had to stop being self employed running my cleaning business in September of 2022 due to coming down with covid and it causing swelling in my spinal cord and I was paralyzed. I am still trying to regain full mobility and walk without using a cane, walker, or wheelchair. With Daimeon needing constant supervision and having so many complications it has really hindered my ability to find an understanding employer who would allow so much time off for Daimeon’s appointments and inpatient stays. Currently Daimeon is under the medical care of:

Epileptology, Hematology/Oncology, Gastroenterology, ENT, Neurology Headache Clinic, General Surgery, Sleep Medicine, Psychiatry/Psychology, Keto Clinic, Nutritionist, Speech and Swallowing Disfunction Therapist, Urology and his Pediatrician. He requires hospital grade medical equipment at night, even with recommended co-sleeping, to alert me to heart rate and oxygen levels as he is at an increased risk of SUDEP (sudden unexpected death in epilepsy). He has had multiple types of seizures in the last 7 months including tonic-clonic, myoclonic, tonic, atonic, absent, and has gone into status epilepticus from his myoclonic clusters. As expected from the type of epilepsy he has being an encephalopathy that status event did show on eeg to cause diffuse slowing which is mild brain damage. Hospital stays for multiple days look to be frequent in our future as we are still trying to find the best treatment for him. Currently he is having daily seizures that cluster together and range from 30-50 in a 24 hour period which is down on this treatment plan from 100’s in 24 hours. Most of his seizures now are during sleep. This medication regimen does come with multiple dangerous side effects including organ damage and bone marrow suppression which we are at an increased risk since we learned he had some blood/bone marrow issues prior to medication. His personality has changed from the stress, seizures, and medication and it has taken a toll on our entire family. He will be attending a special needs kindergarten this year due to his developmental delays and therapy needs and now regression in potty training, speech, fine and gross motor skills. I have been told to start looking and planing for a mobility and seizure response service dog. He also will be needing larger stroller and mobility aids as he fatigues extremely quickly when walking now.

Funds will be used for medical expenses, therapy tools and equipment, travel expenses and parking fees at the hospital and clinics, household bills and expenses. I ask that you please continue to pray for him and our family as we feel that prayers are so beneficial to his healing. Please feel free to share this fundraiser with family and friends.