Greyson was born a healthy, beautiful boy. When you looked at him, all you saw was eyes. People were drawn to him. His smile and his personality captivated people. I knew back then that he would be the one who would change lives. I just didn't know why.
As he grew, it seemed as though his body couldn't keep up. At times he appeared like a rag doll. When he did move, it was like his limbs weighed a thousand pounds. The ability to control his head was a chore. My husband, who is a nurse, and I knew things were just not right. At his 6 month appointment we were told he was just a lazy baby. He was the youngest of four boys and wanted for nothing. He could murmur and have his three brothers at his beck and call.
At 8 months he was still not sitting up or holding his bottle. He had begun to roll over, but stopped. He hated being on his stomach and could not push up on his forearms. He was shaking his head no-no and saying da da. His intelligence was above average, but his body was regressing to that of a newborn. We made an appointment with our pediatrician to discuss our concerns, not wanting to wait for his 9 month appointment. It was this day that our whole world changed.
Immediately we were sent to the hospital for testing. Our doctor was thinking MD. My heart hurt. Grey's CPK levels came back a bit elevated and we were then sent to a neurologist. After 3 months of MRIs, muscle and nerve biopsies, a spinal tap, and tons of blood work results revealed a fatal disorder, Krabbes Disease. This is a leukodystrophy in which the white matter of the brain deteriorates. Worse yet, if tested though newborn screening, it could have been treated and Grey could have been spared.
Yesterday, Hospice came out to our house. Our neighbor witnessed as we signed a "Do Not Resuscitate" order. Grey's 1st birthday is two weeks away. Christmas is three weeks away. We don't know if he'll see either.
My hope is that through his loss we will bring awareness. My state, Texas, newborn screens for 29 of 55 treatable diseases. Unfortunately, Krabbes is not one of them.
Please join me in this journey. It is only the beginning.