For nearly three years, Khelani Barnes’ family has waited for a sign. A movement. A whisper. A smile. Anything that might tell them that somewhere inside the six-year-old girl they remember as fearless, lively and full of energy, there is still a little of the child she once was. Now, those signs are coming. Young Khelani has started turning on her side, rolling and making sounds. Even her cries have become precious to her family. Her grandaunt, Ann Marie Davis, 50, knows how strange it may sound to be grateful for a child’s crying. But after everything Khelani has endured, she says, even that sound feels like a gift. “When she was in the hospital, she was crying and there was absolutely no sound coming from her,” Davis told THE STAR. “You just see her crying. But now, she makes sounds when she cries. So it sounds so weird, but I’m thankful for even the crying.” Khelani underwent emergency surgery in January 2024 to remove a tumour from the right frontal lobe of her brain. Davis said the family was later told that the tumour was a Stage 3 ependymoma, a type of tumour that develops from cells lining the fluid-filled spaces of the brain and the central canal of the spinal cord. Before the surgery, Khelani was, by Davis’ account, a child who seemed to have little fear and even less interest in sitting still. She loved swimming and riding her bicycle. She joined in with household chores and, most of all, loved to dance. “If you see Khelani dancing you would wonder if it was a child or probably want jump in and dance with her,” Davis recalled. “She used to swim, ride her bicycle and involve herself in chores around the house when anyone was doing anything. She used to be so tough, there was nothing that would easily scare her.” Family members said Khelani suddenly fell ill in January 2024, and after suffering multiple seizures, a brain scan revealed a tumour that required emergency surgery. However, since her release from hospital in July 2024, she has been unable to speak, walk or see, prompting her family to form the Khelani Support Group as they seek urgent treatment and financial assistance for care at a leading cancer research hospital in the United States. Davis said the family has struggled to get answers and access to continued care since Khelani left hospital. “We just wanted answers. All we needed was answers as to why. Why is she in this state? She goes for observational checkups every three months but nothing changes.”  She said the family has sought referrals and further medical opinions, including overseas, but has encountered repeated delays and difficulties navigating the health system. She stressed that the family is not seeking to blame anyone but wants another opportunity to help the child. “I have had to come to terms with the fact that answers will not come. My grand-niece, the baby I’ve helped to raise, has suffered so much and it has affected my family and me to the point I have to ask God to give me peace,” Davis said. The family now views her smallest movements as wins. Davis said she has seen Khelani looking towards the ceiling before a smile appears on her face. Those moments are so fleeting that Davis finds herself scrambling for her phone, desperate to capture them. “Mi so desperate sometimes I run and broke my neck to go and try and get my phone to just capture that, because I don’t know if I will ever see it again.” For Davis, hope has become something she actively searches for. She found some through TikTok, where she connected with Antoinette, the mother of Harmony Frazer, a child Davis said is in a similar condition to Khelani. Davis said she watched Harmony progress from being largely unresponsive to showing more reaction and communication with her family. That progress has left Davis wondering what might still be possible for Khelani. “I am hoping Khelani can get to that stage,” Davis said. The experience has also led her to research possible treatment options, including oxygen therapy and stem cell treatment. “She may not be able to run, play and swim like she used to, but at least I want her to get to the point where she can understand things and be happy. I want her to be involved and know that she is loved by her family still. I don’t want her to just exist. I don’t want her to just be a shell.” Davis said she is particularly interested in oxygen treatment but needs medical guidance on whether it is appropriate and safe for Khelani, given her history of brain surgery and seizures. “If it’s not right for her, then it’s okay. I would have tried,” she said. Davis estimates that the oxygen treatment she has researched could cost more than $3 million, a sum far beyond what the family can afford. “I just want to try. That’s all I’m asking. Just somebody to give us the opportunity to try and help her.” Khelani’s  mother, now 21, became pregnant with her at 16. Davis, who had been her guardian, said the experience has taken a tremendous emotional toll on the young mother. “She literally does not know what to do. You have your first child at 16 and she is growing and thriving, this is the last thing you expect.” Davis is praying for a miracle, but if one does not come, she wants to know she did everything within her power. “I refuse to give up on her, she is still alive. She still has needs. She’s still a person. So why not try?” Davis asked. For now, Khelani’s  family is appealing for financial assistance and, just as importantly, medical guidance from specialists who can determine whether oxygen treatment or other therapies could benefit her.

Donations can be made through the family’s GoFundMe Campaign at https://gofund.me/b8b4b947a

Banking information: Ann Marie Davis NCB, Linstead Branch Account: 684411195 JMD Savings