Arèkah was born on July 3rd, 2014, at The Baby Place at Bayfront Medical Center St. Pete, in St. Petersburg, Florida to Wevlyn Graves and Eric Chester. As Arèkah entered the world, she entered with some health challenges that would prove her resilience. Before her birth, Wevlyn had to educate herself after being told that her baby girl would be Downs Syndrome and would have a heart defect, Tetralogy of Fallot. At birth Arèkah was taken to the Southside of the NICU at Johns-Hopkins All Children’s Hospital (JHACH) in St. Petersburg, FL and within 24 hours she graduated to the Northside of the NICU. Going home after a week of observations was the plan, however, Arèkah had other challenges she needed to face while in the NICU. At 4 days old, Arèkah had her first hurdle to cross…surgery on her intestines which also required a Broviac line to be surgically placed. The next challenge was feeding, she struggled with aspirating and her oxygen decreasing while doing so, which led to Wevlyn learning to “sideline” bottle feed Arèkah from a speech pathologist. At 28 days old, Arèkah was released from the NICU and the real journey would surely begin.
At 5 months old, Arèkah underwent surgery on her heart, the doctor’s plans were that Arèkah had a 2 week stay. She pulled the breathing tube out and was released from the JHACH within 5 days, again showing Arèkah’s resilience. Arèkah had a 6-to-8-week recovery period post-surgery and during that time she started rolling over on to her stomach within 4-to-5 weeks yet showing her resilience. From birth Arèkah struggled with having a bowel movement, which was her next hurdle. After being prescribed medication to help, health providers realized that Arèkah was losing weight, which then led to her doctors giving her supplements to retain calories. The calorie retention supplement of choice by her GI (Gastrointestinal) doctor was Pediasure, which Arèkah had an allergic reaction too. She was hospitalized and was diagnosed with being allergic to milk proteins. After 15 months her allergy to milk proteins subsided. Arèkah’s GI doctors discussed placing a g-tube inside her, but Arèkah gained 7 lbs within a month which satisfied doctors…No G-tube! And again, exhibiting her resilience.
The next hurdle was Arèkah’s emotional seizure journey. Being diagnosed within Infantile Spasms at 9 months old, which later caused her to regress and lose the words she had learn to say. Arèkah’s seizure activity continued to progress. At the age of 4, Arèkah’s seizures worsen, causing medication changes and several EMUs (Epilepsy Monitoring Unit). Doctors tried many different natural options to reduce her seizures, such as, the Keto Diet. Finally, in the year 2023, Arèkah was diagnosed with Lennox Gastaut Syndrome (LGS). To have LGS a patient must have 3 or more different forms of seizures. However, due to doctor changes, Arèkah began seeing Dr. H. Shakankiry at UF Pediatric Neurology Group. UF Pediatric Neurology is where Wevlyn and Arèkah’s granny, were educated by Dr. Shakankiry about the severity of LGS and began to place safeguards around Arèkah. In June of 2024, Arékah was admitted to UF Shands in Gainesville for 3 days for an EMU, this is where Wevlyn was notified that Arékah was having 4 different forms of seizures. The doctor than added a new medication to her medication regime. Upon starting the new meds, Arèkah, reacted very well…she was calmer, more loving, more attentive, etc.
And on December 1, 2024, after a very active day, her brother, Ezra, went to retrieve Arèkah from her stroller and give her a bath and there she sat unresponsive. Her mother started CPR on her and was relieved by HCSO Deputies who ran her to the ambulance. Arèkah was airlifted by helicopter to Tampa General Hospital. Her mother, Wevlyn, with the assistance of Dr. Brett Russi and Ryan, (Arèkah’s nurse for all 3 days she was there), together made great decisions regarding the necessary plan of actions best for Arèkah. On December 4, 2024, Arèkah, while lying in the arms of her mother, Wevlyn and brother, Ezra, and surrounded by her loved ones transitioned into eternity at 5:47PM.
Arèkah leaves to cherish her memories: Mother, Wevlyn Graves and father, Eric Chester. Grandparents: Margaret Graves (Maternal Granny) and Paul (Bulesa) Ratliff (Paternal Pop-Pop). 2 Brothers: Ezra Chester and Ezekiel Chester and 1 sister: Amirah Johnson. One uncle: Charles (Choya) Graves, II and 4 aunts: Tiarè (David) Williams, Javonkah Graves, Tiffani and Nicole Chester. First cousins: Deiondre Graves, Darnell Pitts, DeYonté Graves, Emmanuel Graves, Jamiah Wells, Marcus Wells, Jr., Tatiyana Graves, Jamilyah Wells, Penelope Nelson, Kaison Sampson, LaDarian Chester, Aveon Smith, Andriss Smith, and Randy Thomas. Godparents: Troy and Lashawn Rush, Antonio and Felecia Frank, and Sabrina Frazier. Special loved ones: Anita Washington (Great-Aunt), Margaret James (GIF Teacher), the nurses and staff at Tender Care. And a host of great uncles, great aunts, cousins, and loving friends.
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