Martina’s Story
Parents Kristine and Mark were devastated when their daughter, Martina, was diagnosed with cerebral palsy and epilepsy at birth in April 2016, spending her first 43 days in hospital in the Philippines.
“She was born at 38 weeks, just under five pounds, and she would experience up to 30 seizures a day that would cause her whole body to stiffen and then jerk uncontrollably, which were very painful to witness. Thankfully, medication helped make them more manageable,” explains Kristine.
The family moved to the UK from the Philippines in December 2019, registering with a GP to begin managing her symptoms. “We affectionately called her ‘Mighty Marty’, because she was just that. She was just so strong.”
As Martina’s condition worsened, she started having episodes where she had pauses in her breathing, leaving Kristine and Mark heartbroken and terrified. “Her cerebral palsy restricted her breathing, and doctors told us ventilation wasn’t an option. If Martina stopped breathing again, there was nothing more they could do.”
This was when the family were referred to Shooting Star Children’s Hospices.
“At first, I didn’t know what to expect,” Kristine says. “It sounded so final, so heavy. I think we were in denial. Is this really happening? Our daughter’s life could just be taken and there’s nothing we can do to save her. But when we arrived at Shooting Star, it wasn’t the end I imagined. It felt like a place of comfort, a place that was there to help her and us.
“It really changed how I viewed hospice care,” Kristine reflected. “I had seen it as only ‘end of life’, but it was clear it was about managing symptoms and making her comfortable, which made the whole experience more bearable.”
“Shooting Star provided comfort in a way that words can’t fully describe. With no family nearby, we relied on their care and support. Martina adored the garden and sensory room at Christopher’s. It was a place where she truly thrived.”
Kristine and Mark received regular ongoing support, even at home. “At any hour, we knew that Shooting Star was always there, we weren’t alone, they were with us every step.
“The team guided us through the hardest decision of our lives – bringing Martina home for her final days. It was a difficult choice, but we felt that home was the right place for her.”
Martina died in July 2022, aged six. Genetic testing later confirmed Martina had WOREE syndrome, a rare neurodevelopmental disorder. “It’s not the normal pattern or something you can prepare for, a mother losing their child. I am so grateful for how my counsellor at Shooting Star has helped me manage my emotions and understand my grief.”
One of the most meaningful moments for Kristine was the Memory Day. “We hung a leaf on the memory tree with Martina’s name on. It’s a symbol that she will always be part of Shooting Star. Knowing her memory lives on means so much.” The Memory Day also became a source of community, “We’ve met so many families who truly understand through Shooting Star. We support each other and share stories.
“Even now, we still get check-ins, something I never expected. To know you’re not forgotten after a loss – it’s huge.
“I want to thank Shooting Star for everything they do,” Kristine concludes. “Being there for families like ours – it means everything.”
Please help us continue to be there for families like Martina’s and consider donating today.
