Helping Hands for Amaya
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Our beautiful, smart, talented, loving and caring 13 year old daughter Amaya Leilani Mayfield is truly a blessing from God. She has been a happy and healthy child all her life. She has a smile that lights up any room she walks in. She loves her family and friends. She loves school and is an AB honor roll student. She aspires to be a lawyer and a fashion designer when she grows up.
March 20, 2019, our lives were turned upside down. Amaya began to have generalized seizures about once a week, that gradually started to get worse and worse each time. She began to lose her memory, she felt burning in her eyes and her limbs, she started to have tremors in her hands, and it got to a point where she began to hallucinate. She had an EEG and a MRI done, which came back normal.
May 24, 2019, Amaya was diagnosed with a rare autoimmune disorder called Hashimoto's encephalopathy, after a lumbar puncture showed inflammation around her brain. She received an ivig treatment and was placed on steroids. After being discharged from the hospital, Amaya returned back to normal for about a month and a half.
Then July 10, 2019 the seizures returned. This time more frequently, about every 4 to 5 days. Another lumbar puncture was performed and the inflammation had returned. She got another round of the ivig treatment. She also got a rituximab treatment, which was a total of 4 doses, once every week for 4 weeks.
The seizures continued and she started to have them every 2 to 4 days. And I started to notice that they were lasting longer. Amaya's whole demeanor began to change. She was very irritable, she slept a lot, she was off balance, and her tremors had gotten worse. And at night she was very restless and would make strange noises in her sleep.
September 11, 2019, Amaya had a seizure early in the morning which lasted longer then usual. We called 911 and they transported us to Children's Hospital of the King's Daughters. They hooked Amaya up to an EEG for a few days. As we were in the hospital, I noticed that each day Amaya was declining. She got to a point where she would just stare and be in a daze, she could barely talk, she would repeat herself, she couldn't stand, she couldn't walk, she couldn't sit up. They started her on plasmapheresis, to get rid of the negative antibodies that were attacking her immune system.
September 16, 2019, around 9:30 p.m. Amaya started to seize but it wasn't her usual tonic clonic seizure, it was full body stiffening and her heart rate was sky high. That lasted close to an hour. Then she began to have her usual seizure. They began to give her ativan to try and stop it but to no avail. They continued to pump her with it and nothing. They gave her another medication and still nothing. At this point 4 hours of seizure activity.
They finally sent her down to ICU so they could administer stronger medications. They ended up having to intubate her. Even with the stronger medications she was still seizing. They finally administered the strongest medication and that put her into a medically induced coma to allow her brain to rest. Almost 12 hours of seizure activity.
While in ICU they gave her a dose of cytoxan to help reduce the inflammation. Every other day they would check her blood to make sure that the sedation levels were going down. And slowly but surely they were. We couldn't wait for her to wake up so we could see that beautiful smile. Day by day we sat anxiously waiting as the numbers dropped lower and lower, then finally it was all out of her system but Amaya still hadn't woke up.
October 3, 2019, Amaya's 13th birthday, they did an MRI. The images showed significant brain damage. No one could have imagined the pain and hurt we felt at that moment. My heart dropped out of my chest. A day that we should have been celebrating our baby girl becoming a teenager, turned into a day full of tears and sadness.
The doctors still have no idea what could have caused any of this. They aren't even sure anymore if it was ever Hashimoto's encephalopathy. They do know that it is some type of encephalitis. They've done genetic testing and have reached out to colleagues all across the country, still no answers.
Since October 3rd, Amaya has had 2 more MRIs, which show no improvement. She's had to get a tracheostomy and a G-tube also. The doctors say that she will have moderate to severe disability and they don't know if she will ever talk, hear or see again.
Amaya is currently in the transitional care unit at the CHKD. As of now she is in a vegetative state from what we understand. She has been opening her eyes more but not tracking. She moves her limbs spontaneously sometimes, not sure if its purposely or just a reflex. She recently turned her head from side to side. She coughs and appears to swallow. And she yawns, alot.
We are at the point where we have to make a decision to either bring Amaya home and care for her ourselves or take her to St. Mary's, which is a nursing home for children with disabilities. Our goal is to get Amaya home.
This GoFundMe page is being setup to help with Amaya's medical care. No donation is too small. And even if you are not able to donate, if you can share Amaya's story with others it would be greatly appreciated. Hopefully her story can get into the right hands and our family can get more insight on her condition.
Thank you so much for taking time out of your day to read through Amaya's story. I know it was a little lengthy but I wanted to share as much as I could with you all. Thank you for your kindness and generosity.
March 20, 2019, our lives were turned upside down. Amaya began to have generalized seizures about once a week, that gradually started to get worse and worse each time. She began to lose her memory, she felt burning in her eyes and her limbs, she started to have tremors in her hands, and it got to a point where she began to hallucinate. She had an EEG and a MRI done, which came back normal.
May 24, 2019, Amaya was diagnosed with a rare autoimmune disorder called Hashimoto's encephalopathy, after a lumbar puncture showed inflammation around her brain. She received an ivig treatment and was placed on steroids. After being discharged from the hospital, Amaya returned back to normal for about a month and a half.
Then July 10, 2019 the seizures returned. This time more frequently, about every 4 to 5 days. Another lumbar puncture was performed and the inflammation had returned. She got another round of the ivig treatment. She also got a rituximab treatment, which was a total of 4 doses, once every week for 4 weeks.
The seizures continued and she started to have them every 2 to 4 days. And I started to notice that they were lasting longer. Amaya's whole demeanor began to change. She was very irritable, she slept a lot, she was off balance, and her tremors had gotten worse. And at night she was very restless and would make strange noises in her sleep.
September 11, 2019, Amaya had a seizure early in the morning which lasted longer then usual. We called 911 and they transported us to Children's Hospital of the King's Daughters. They hooked Amaya up to an EEG for a few days. As we were in the hospital, I noticed that each day Amaya was declining. She got to a point where she would just stare and be in a daze, she could barely talk, she would repeat herself, she couldn't stand, she couldn't walk, she couldn't sit up. They started her on plasmapheresis, to get rid of the negative antibodies that were attacking her immune system.
September 16, 2019, around 9:30 p.m. Amaya started to seize but it wasn't her usual tonic clonic seizure, it was full body stiffening and her heart rate was sky high. That lasted close to an hour. Then she began to have her usual seizure. They began to give her ativan to try and stop it but to no avail. They continued to pump her with it and nothing. They gave her another medication and still nothing. At this point 4 hours of seizure activity.
They finally sent her down to ICU so they could administer stronger medications. They ended up having to intubate her. Even with the stronger medications she was still seizing. They finally administered the strongest medication and that put her into a medically induced coma to allow her brain to rest. Almost 12 hours of seizure activity.
While in ICU they gave her a dose of cytoxan to help reduce the inflammation. Every other day they would check her blood to make sure that the sedation levels were going down. And slowly but surely they were. We couldn't wait for her to wake up so we could see that beautiful smile. Day by day we sat anxiously waiting as the numbers dropped lower and lower, then finally it was all out of her system but Amaya still hadn't woke up.
October 3, 2019, Amaya's 13th birthday, they did an MRI. The images showed significant brain damage. No one could have imagined the pain and hurt we felt at that moment. My heart dropped out of my chest. A day that we should have been celebrating our baby girl becoming a teenager, turned into a day full of tears and sadness.
The doctors still have no idea what could have caused any of this. They aren't even sure anymore if it was ever Hashimoto's encephalopathy. They do know that it is some type of encephalitis. They've done genetic testing and have reached out to colleagues all across the country, still no answers.
Since October 3rd, Amaya has had 2 more MRIs, which show no improvement. She's had to get a tracheostomy and a G-tube also. The doctors say that she will have moderate to severe disability and they don't know if she will ever talk, hear or see again.
Amaya is currently in the transitional care unit at the CHKD. As of now she is in a vegetative state from what we understand. She has been opening her eyes more but not tracking. She moves her limbs spontaneously sometimes, not sure if its purposely or just a reflex. She recently turned her head from side to side. She coughs and appears to swallow. And she yawns, alot.
We are at the point where we have to make a decision to either bring Amaya home and care for her ourselves or take her to St. Mary's, which is a nursing home for children with disabilities. Our goal is to get Amaya home.
This GoFundMe page is being setup to help with Amaya's medical care. No donation is too small. And even if you are not able to donate, if you can share Amaya's story with others it would be greatly appreciated. Hopefully her story can get into the right hands and our family can get more insight on her condition.
Thank you so much for taking time out of your day to read through Amaya's story. I know it was a little lengthy but I wanted to share as much as I could with you all. Thank you for your kindness and generosity.
Organizer
Tiara Mayfield
Organizer
Suffolk, VA