The Tribune

By ALESHA CADET

Tribune Features Reporter

acadet@tribunemedia.net

"Celebrate Life" was the theme for a special fun run/walk held last Saturday in honour of a little girl, Layla Riley, who has been battling sickle cell disease.

The emotional fundraiser, which saw a satisfactory turnout, sought to raise money to support a bone marrow transplant for nine-year-old Layla as well as increase awareness of the red blood cell disorder.

Her mother, the widowed Tamara Riley, describes Layla as "an ordinary girl" who loves to ride her bike, watch TV and who enjoys a good laugh. She is also the little darling at her church. Her biggest challenge in life comes from living with sickle cell disease, a severe hereditary form of anaemia.

In 2016, Layla received a life-saving bone marrow transplant in the United States. Around her 140th day post-transplant, in December 2016, she received great news - she was clear to travel home to the Bahamas. It was a perfect Christmas reunion with family and friends.

Then, in January of this year, with her doctor's permission, Layla was allowed to return to school for half days.

Unfortunately, her almost carefree days did not last long. In February, Layla began to complain about tummy aches and her appetite started to diminish.

Her mother immediately alerted her doctors in Miami. They quickly advised her to bring Layla for a visit. With their luggage packed once again, unsure of their return, Layla and her mother were on the flight the following day.

Layla was admitted for a twenty-four hour surveillance as doctors suspected Layla may be experiencing Graft Versus Host Disease (GVHD). Those apprehensive twenty-four hours eventually became eight weeks.

In April, she was finally discharged with strict instructions to remain in the US in close proximity to Nicklaus Children's Hospital for a year, for weekly visits and in the case any emergency care is required.

"On a daily basis she is administered medication through her PICC (a peripherally inserted central catheter) line, pricked on her finger to test her sugar level, and wears a mask to cover her nose and mouth when she is in public. Layla is out of hospital and hopes to enrol in school in the Fall in Miami under certain conditions. In addition, she will undergo physical, occupational and speech therapy," Ms Riley told Tribune Health.

Layla is resilient and is determined to get well and live a normal life. As for her mother, it is simply amazing for her to see her young daughter cope with all the medical procedures and never complain or make demands.

"I long for the day that she is given a clean bill of health. This would mean that her immune system is strong. I look forward to being back in the Bahamas, in my own home with a 9 to 5. Simply put, I long for a normal day for Layla and I. Being unemployed and really unable to work, my financial demands is great as a widow, having to meet rent and living expenses in Florida as well as ongoing expenses in Nassau. It has been a long road leading to this point, but there is light at the end of the tunnel and I am hopeful that the worst is behind us," she said.

Regarding the turnout for last weekend's fun run/walk, Ms Riley said she felt like people truly cared. This was the second year the event was held and it drew close to 350 participants.

"I felt like they understood the struggle. There was a participant with Stevens-Johnson syndrome and another disabled, and these persons said. 'I am here to walk for Layla.' Persons wanted to know more about Layla and her condition. They wanted to know what is next for her and what else she needs. That really moved me and I am truly pleased that persons came out and wanted to do it for the cause," she said.

Ms Riley said Layla longs to be back in the Bahamas to spend time with her grandparents and do ordinary things most kids her age take for granted, like going go the beach.

"As for me, my motivation is seeing my baby get well. My love for her motivates me to do whatever it takes to ensure that her health is improving daily. It's nothing short of a miracle of how we each draw great strength from the other. Once I am there, Layla is fine, even during her most difficult time. Knowing fully the status of Layla's condition and immediate and effective actions being taken keeps hope alive. The progress Layla continues to make is enough to keep me motivated," she said.

For more information or to pledge support, visit Layla's Go Fund Me page at https://www.gofundme.com/laylariley or call 424-4699, 376-1350.