Smiles for baby Charley

 Charley's Story As of 8/11/2018 Charley was born on August 13th 2013. She was healthy and beautiful with 10 fingers and 10 toes. Charley was the happiest baby I'd ever seen. She was perfect! At 2 months old I started to think she was a little on the small side. I asked her doctor and he said that she was fine, she may just be a small child. At 3 months old I was even more concerned and took her back to the doctors office and in fact she had lost weight from her last visit. We then started trying to figure out what was causing her weight loss. After many tests and scans they found a mass in her brain. We were flown to Children's of Alabama in Birmingham. There they did a biopsy and December 3rd 2013 Charley was diagnosed with brain cancer, an inoperable brain tumor "Pilocytic Astrrocytoma" and an extremely rare neurological disorder "Diencephalic Syndrome" that is caused the tumors. DIencephalic Syndrome is a very rare neurological disorder characterized by failure to thrive, abnormal thinness (emaciation), amnesia, intense sleepiness, unusual eye position and sometimes blindness. It is normally seen in infancy or early childhood but some cases have been reported in older children and even adults. Diencephalic syndrome is usually caused by a brain tumor such as a low-grade glioma or astrocytoma. A year into treatment Charley's tumor had grown so much that she needed brain surgery to remove some of the tumor to save her life. That surgery was about 13 hours long they were able to remove 60% of the tumor which was more than they had expected. Charley completely lost her sight in that surgery but it saved her life and thats what matters most. It hasn't slowed her down or bothered her at all. Charley has had a total of 13 surgeries, 7 of those were brain surgery and 2 of those were major brain surgery. She has been under anesthesia 32 times and counting. She will be 5 years old August 13th 2018 and she has been on chemo treatment all but a totally of 6 months of her entire life. On her 5th birthday she will receive her 129th dose of chemo. Charley is a special little girl not only because of how strong and resilient she but how much love and happiness she spreads. She has made more of an impact on the world in her 5 years than the average person does in an entire lifetime. Her over the top bubbly personality is infectious. She is truly one of a kind and I am so proud to be her mother.