Lyndsey Wilson Memorial Fund

While I have worked tirelessly in advocacy for years and have set up many fundraisers, I never in a million years thought I would be writing this text for a fundraiser for my own family. On Thursday, June 29th, my youngest sister was rushed to UNC Hospital in an ambulance after experiencing sudden shortness of breath. As the sole caregiver for her autistic son, and living with her (our) elderly mother I personally assumed that was the reason for needing the aid of EMS. Within hours of hearing this, our other sister (Shannon), a doctor at UNC who rushed to be by her side called me and said the situation was actually serious.

Over the next nine days we worked with the most professional and caring staff at UNC to get her the best care possible. We found out she had a genetic heart defect that had gone previously undiagnosed and would need a heart transplant. She was placed on ECMO (life support) and was not conscious, but was occasionally responding to commands. She wasn't the ideal candidate for a heart transplant, but she is also 35 and the sole caregiver for her son. So, the staff at UNC advocated for her and we were thrilled to hear she was not only on the list, but was pushed to the top of the list.

We were hopeful and scared. We received constant updates and every time we called the nurses and doctors we were comforted that they were giving her the best care. As I was headed up to North Carolina on Saturday, July 8th, to wait for the heart transplant procedure, I received a call from Shannon that was beyond my comprehension. All I remember hearing is "not compatible for life" and "we have to "let her go".

Shortly after I arrived, Lyndsey passed peacefully with me, Shannon and our mother right beside her. I will never, ever forget the compassion of the staff at UNC. We had to go home and figure out how to tell her son, Matt, and how to fill this giant hole in our lives. Because she was so young and because she focused on providing constant care to her son, there was no will or life insurance in place. She's a highly private person, wouldn't want a fuss over her, but we do want to provide the very basic funeral for her and will have a bit of a legal hurdle to make sure legal and custodial arrangements are in place for the rest of the family to be able to advocate for Matt.

We are overwhelmed at the level of support we have received so far and know the best way for us to grieve and honor Lyndsey is to do everything to ensure that Matt has the best care.