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“Paint Mystic Purple” color fun run/walk

November 6, 2021 @ 7:30 pm - 10:30 pm

Amelia was born August 21st 2019. Everything was seamlessly normal, her labs and x-ray came back clear so we headed home to start our life as a family of 4. Three weeks later, we were driving to the emergency room with Amelia slowly dying in our arms due to respiratory arrest. After being transferred to Arkansas Children’s Hospital, Amelia was admitted into PICU where she was intubated and treated for another 3 weeks. After tests were ran, Amelia was permanently diagnosed with a very rare genetic mutation that causes epilepsy. After 2 months in the hospital and finally being released home, Amelia unfortunately went under respiratory arrest once again due to another seizure. This became a regular occurrence for the next 18 months as Amelia was in and out of the hospital. In those 18 months, Amelia suffered from life threatening issues that caused 1-2 month long admissions during a pandemic. Amelias first 2 years of life have been very challenging. Due to Amelia’s gene mutation, her diagnoses are lifelong with no cure. After many months of research, experience, and learning about Amelia’s gene mutation we have put together a very good team of Neurologists, Geneticists, Therapists, Pulmonologists, Ophthalmologists, G.I doctors, Cardiologists, and doctors in Complex/Palliative Care to finally help maintain Amelia so that she has a good quality of life. She continually battles seizures and other diagnoses that are associated with her gene mutation. Less than 400 people in the world have Amelia’s gene mutation. Amelia’s epilepsy is very complex as it is not generalized and so far she has been resistant to all the medications we’ve tried. Amelia can suffer from multiple seizures a day that can range from 1 seizure to 300 seizures in one day. In addition to seizures, Amelia suffers from lung disease in which she is susceptible to chronic pneumonia, staph, collapsed lungs, and viruses. Other diagnoses that stem from her gene mutation include intellectual disabilities, movement disorders, infantile spasms, hypoxemia, hypotonia, and lack of mobility. The biggest fear factor is the possibility of SUDEP, which is Sudden Unexpected Death in Epilepsy. Amelia has been given a lot of limitations in life. As Amelia’s parent, we have been told and warned of the things no parent ever wants to hear or see happen. With cases like Amelia, there is a very small life expectancy. Amelia has been able to push past her limits, even when she feels like giving up. Amelia has came back from the unimaginable and still manages anything thrown her way.


November 6, 2021
7:30 pm - 10:30 pm

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