At 2 years of age, our daughter was admitted to the Pediatric Palliative/Hospice Care Program.
Her condition was still considered rare, complex, and unknown. We continued to have zero answers, zero chance at a cure, and we were completely shattered.
About a month later, we had a neurology appointment and they asked if we wanted to see the MRI images in person. Reluctantly, we agreed.
Mentally, I anticipated I would feel immense heartache again. I was prepared to gasp in disbelief of visually seeing my daughter’s disappearing brain. I tightened my throat to hold back the ugly tears to the best of my ability.
As expected, I gasped when I saw the images. But for a very unexpected reason.
Yes, her brain was missing. But in its absence, a heart had formed. A HEART was the center and base of my daughter’s brain.
Today, Gwen is 8 years old. She has never had a brain MRI again as her medical team fears she is not strong enough to go under anesthesia unless absolutely needed. Therefore, we do not know the current status of her brain. Based on her continued decline, we know the results would not be good.
“My daughter is 8 years old.” I shouldn’t be able to say that statement. And I am thankful everyday that I am able to say that statement.
This disease is absolutely brutal. But my daughter has proven to be an unbelievable fighter.