Fund Childhood Cancer Research in Honor of Rally Kid Charley
Fund Childhood Cancer Research in Honor of Rally Kid Charley
Charley’s Cancer Journey
On November 8, 2019 Charley Elise “Smiles for Baby Charley”, age 6, of Pensacola, Florida passed away peacefully in the arms of her loving mother. Charley was born August 13, 2013 at Studer Family Children’s Hospital at Sacred Heart in Pensacola, Florida.
Charley was affectionately known as Baby Charley, Char baby, and Charbabes.
To know Charley was to love her! You couldn’t help but notice her exceptional manners. She never forgot to say “thank you” and always referred to others as “ma’am” and “sir”. Charley had the most contagious laugh with the brightest smile. Charley had a list of favorite things to do, one of which was to tear paper. She could rip it better than any shredding machine! Being at home was Charley’s favorite place to be. That is also where she was able to find the seam of the carpet and destroy it at every chance she could get. Cardboard boxes were also a favorite of hers to demolish. Charley would laugh hysterically when she heard people fart. She loved swimming and relaxing in the water. She was looking forward to having her own swimming pool built in her backyard, so she could swim at home beginning the summer of 2020. Charley loved riding in her wagon, which often times was decorated by her mother. Charley absolutely adored everything about her kind and gentle big brother. Playing with his nose was her favorite, and he was so sweet to allow her to do as she wanted. Although Charley’s body relied on her feeding tube for nutrition, she loved to lick the salt off of pretzels and pistachio shells. Charley enjoyed the simple things in life. When asked if she could go anywhere in the world, she responded with taking a “trip to Starbucks”. At home, you could find her dog Coco snuggled up next to her. Charley loved listening to music, usually requesting to hear her own playlist.
Charley was three months old when she was diagnosed with Pilocytic Astrocytoma of the hypothalamus, a brain cancer, and the extremely rare neurological disorder, Diencephalic Syndrome.
After a year of chemotherapy, Charley began developing additional neurological symptoms, caused by the growth of her brain tumor. Charley’s only chance for survival was to undergo a high risk, tumor debulking brain surgery.
Charley’s tumor had previously been declared inoperable, however the new growth formed outside of the hypothalamus area of the brain.
On December 10, 2014 Charley had her first tumor debulking surgery. The pediatric oncology team at The University of Alabama at Birmingham (UAB), were able to successfully remove a large portion of her tumor. The surgery left her permanently blind, a risk her family was aware of pre-surgery. Charley recovered better than expected from her surgery. Traditionally, the high risk brain surgery should have set backs, yet Charley woke from surgery squirming happily and pulling at the medical devices attached to her tiny body.
Charley and her family were well known at Sacred Heart Children’s Hospital in Pensacola and at UAB, since Charley’s medical protocol required treatment every other week, year round. In January, 2016, during a routine MRI, her doctor noticed tumor growth, only this time, it was on a different side of the hypothalamus. At 2 1/2 years old, Charley would be faced with a second major brain surgery. Once again, Charley came out of surgery happy, without the side-effects that were discussed during her pre-op.
Over the next two years, Charley battled her cancer with strength, determination and courage. Despite vomiting nearly 20 times a day, traveling to and from doctor’s appointments every other week, and learning to overcome her challenges of being blind and unable to walk, Charley remained high spirited, letting nothing slow her down. Charley was able to develop an incredible personality even though she was a very sick little girl.
Even with tubes inserted in her body, Charley continued to grow into a funny, charming, and talkative little girl. Her big beautiful smile and witty personality was contagious. Charley’s family loved to share her journey through video and pictures on social media, which provided them with enormous virtual support throughout her cancer battle. Charley’s story spread around the world, creating a Facebook group with more than 600,000 followers.
In August 2019 Charley began experiencing new symptoms, a result from the growth of her brain tumor. This time, her symptoms included multiple seizures each day and apnea episodes. Charley and her family would soon be faced with her 3rd major brain surgery. Unfortunately, the third debulking brain surgery recovery was unlike the ease of her first two surgeries. Charley’s tiny body was tired. The side effects over the next three months following surgery left her hospitalized with multiple side effects, including irregular body temperatures and discomfort. All the while, Charley never let her spirit down. Although her waking moments were minimized, they were filled with her bright personality.
Charley’s family lived every day to the fullest, oftentimes quoting “Live Like Charley”. It was always a priority to Charley’s mom that her precious little girl never suffer, and always be kept comfortable during her cancer fight. In her heart, Charley’s mom knew that the day would come that no parent should ever have to experience. She would have to make a brave, loving and selfless decision to allow her daughters oncology team to transition her from treatment protocol to palliative care. After six years of continuous fighting, aggressive treatments, and three major surgeries, Charley passed away, surrounded by her family and loving oncology team at Studer Family Children’s Hospital at Ascension Sacred Heart.
Charley is survived by her family, mom Heather, brother Elijah, and grandfather “Pop”.
In her six short years on earth, Charley made a tremendous impact in the lives of others. Charley’s family wishes to thank everyone who supported and loved for them over the past six years, her medical teams at UAB and Sacred Heart, friends, and people from around the world who never had the chance to meet Charley, but who were inspired by her.
Her family is determined to continue her fight against childhood cancer, by helping other children and families diagnosed with pediatric cancer. Her family has created Smiles From Baby Charley.
TO HONOR CHARLEY, HER FAMILY REQUESTS DONATIONS BE MADE TO SMILES FROM BABY CHARLEY, to help support families currently fighting pediatric cancer and to fund childhood cancer research through Rally Foundation, to find better treatments with fewer long-term side effects and, ultimately, cures.
Every little thing is going to be alright…