Meeting with David and Stephanie Schleyer, the parents of Ellie -- a young girl suffering from an undiagnosed neurological disorder -- was a welcome change for us. It allowed a strange sense of normalcy from our unique day-to-day.
It was incredible to hear about their struggles and successes during the last three years. While Ellie was not able to join us at this meeting, we are excited to meet her soon and continuing to gather and collaborate with her family in the coming years.
Although Ellie and Elliott are suffering from different unknown conditions, there are similarities and it is therapeutic to speak with others who have an understanding of what it is like to have a child suffering from an unknown neurological disorder.
We are so thankful to the advocate and nurse practitioner at Children’s who put us in touch.