amanda sattley

Everley has had a rough couple of weeks she was sick with an upper respiratory infection and seemed to be getting better then became jaundice her skin at first then her eyes which prompted our ER visit on sept 1st she appeared to be on acute liver failure and her inr was dangerously high. Initially her liver function tests were normal but apparently that is a side effect of her seizure med vigabatrin. So it masks alt and ast elevation she has been on vigabatrin since last September. Everley was tested for every virus infection parasite fungus all of which can back negative. Genetic testing was also done. None of which explain her presentation or what they are now calling chronic liver failure based on the biopsy they had done. She had to be intubated started on dialysis to clear the toxins and had a pretty scary gi bleed. Basically vigabatrin toxicity can cause mri changes in specific areas of the brain, of which they saw on her MRI. Different from her initial injury. Vigabatrin along with all her other meds were stopped she was started on a dexmetatomidine drip to cover her dystonia and keep her comfortable. She has been extubated her numbers are normalizing off of the dialysis and she is improving slowly and we are just so very grateful to the amazing staff on 11 Bert at Boston children's hospital who once again have saved our little girl. She is so strong and resilient we are thankful for all the prayers and well wishes from all of you. ❤️ our girl is still fighting.

Support for Amanda’s father and sister Amanda is raising this fundraiser for their father and sister after their family was hit by several heartbreaking challenges at once. Amanda’s father recently started dialysis while also caring for Amanda’s sister, who suffered a stroke and is now living with massive deficits. As they were already trying to manage serious medical and caregiving needs, their home was devastated by an electrical fire. They lost everything, and the loss has left them in urgent need of basic support as they try to get through this overwhelming time. The funds raised will help Amanda’s father and sister with the essentials they need right now, including clothing, food, and shelter. After so much loss, this support would help give them some stability and comfort while they begin to rebuild. Amanda is asking for help for their family during this incredibly difficult moment. Any donation, no matter the size, would make a meaningful difference, and any help would be greatly appreciated.