Larayia-Faith was just weeks away from her second birthday when the unexpected news came. She was diagnosed with high-risk localized parameningeal embryonal rhabdomyosarcoma, a type of cancer that affects muscle tissue. Her journey, filled with medical obstacles and challenges, is one of immense strength, courage, and the power of a family’s love.
Born at 32 weeks, Larayia-Faith spent four weeks in the NICU. As a premature baby, she faced early challenges, but her parents watched with joy as she grew into a happy and loving child. Though her development was delayed, they initially attributed this to her early arrival and the typical challenges faced by premature babies.
However, when Larayia-Faith began to experience discomfort while learning to stand, her parents, familiar with the signs of medical conditions like Ehlers-Danlos syndrome from previous family experiences, began to worry. They reached out to their GP, but, at the start of the COVID-19 pandemic, most communication was done through phone and video calls.
For three weeks, doctors suspected a urinary infection. But when Larayia-Faith began to refuse baths – something she had always loved – and a lump appeared in front of her ear, her parents’ concern deepened. They pushed for a face-to-face appointment, but even then, the GP ruled out cancer and suggested it might be a salivary stone, advising that if it didn’t resolve by July, they should return.
The family’s worries continued as Larayia-Faith’s condition worsened. They took her to A&E, where doctors remained unsure of the cause. Despite an initial theory of a salivary stone, one doctor was not convinced, prompting further tests. After blood tests and scans showed no clear diagnosis, they were sent home with a promise of a follow-up appointment.
However, over the weekend, Larayia-Faith’s health took a turn for the worse. At her next appointment, doctors decided to urgently transfer her to the High Dependency Unit (HDU) at Southampton Hospital. That’s when they received the devastating news: it was a tumor.
The following morning, Larayia-Faith underwent a biopsy and had a Hickman line fitted. She was sedated overnight, and the next day, she had a lumbar puncture and bone marrow test. The results confirmed an aggressive cancer that had spread toward her brain, blocking her right nostril and compromising her airway.
Immediately, Larayia-Faith began chemotherapy, but her condition worsened, and just hours later, she suffered a respiratory arrest. Thanks to the quick actions of the family next to them and the dedicated hospital staff, she was brought back. But this was only the beginning of a long, tough battle.
Larayia-Faith was put into intensive care and had a tracheotomy due to her compromised airway. Though it was an incredibly difficult decision for her parents, it proved to be the best course of action. She spent weeks in the PICU, and during this time, her parents saw firsthand her strength and resilience. Despite being sedated, Larayia-Faith would fight through it, especially when she heard her mother’s voice.
The journey didn’t stop there. Larayia-Faith continued to receive high-risk chemotherapy, but the tumors didn’t stop. A new MRI revealed two more tumors, and her treatment protocol changed. She was now given a less than 30% survival rate. But as always, Larayia-Faith lived up to her “sassy pants” nickname. She needed four Hickman lines, two PICC lines, and even suffered an incident where chemotherapy was inadvertently administered to her eye when a line split.
Despite the obstacles, Larayia-Faith’s strength continued to shine through. She received a gastrostomy to help her eat, and she learned to talk slightly over her tracheotomy tube. Through it all, she remained cheeky, full of life, and determined to fight.
After six weeks of intense radiotherapy in London and a year of maintenance treatment, there was a glimmer of hope. Two years later, there was no evidence of disease. Although Larayia-Faith was also diagnosed with cerebral palsy and global developmental delay, she continued to defy the odds.
Larayia-Faith’s journey, though filled with pain and hardship, is also filled with hope and strength. Despite the many struggles, she continues to smile, laugh, and brighten the days of everyone around her. Her parents are incredibly proud of how far she has come and how much she continues to inspire everyone she meets.