A father has spoken of the heartbreaking reality of watching his two-year-old son battle a rare permanent brain injury every day. Daniel Heskes, 31, from Anfield, said he and partner Jamie-Lee Bradshaw, 30, spent months fighting to be heard before their son Ralphie Ray was diagnosed with Periventricular Leukomalacia (PVL).
Early struggles and premature birth
Ralphie was born 10 weeks premature and spent his first 36 days in intensive care. Daniel said the first few weeks were particularly difficult as Jamie-Lee was too unwell to visit him for the first fortnight after giving birth. But once she could see her son, the couple quickly became concerned.
Daniel told the ECHO: “When Jamie-Lee started seeing the baby, things just weren’t right. His oxygen levels kept dropping. We raised it to doctors and nurses, and they kept saying to us, ‘no, he’s fine. It’s just prematurity. It’s just his gestation’. But we knew something wasn’t right.”
A doctor reviewed the baby boy and he was put on oxygen. Ralphie later underwent numerous operations to assess his airways, which led doctors to discover he had a floppy airway, medically known as laryngomalacia or tracheomalacia. This occurs when the soft cartilage of the voice box or windpipe is underdeveloped and collapses during breathing.
Diagnosis after a seizure
Nearly two years later, Ralphie has only recently managed to come off daytime oxygen and still relies on it every night. However, it wasn’t until after Ralphie suffered a devastating seizure last year that the family finally got the answers they had been searching for.
Daniel recalled the terrifying moment his son suddenly turned grey after waking from an afternoon nap before suffering a major tonic-clonic seizure. He said: "He woke up from a nap and just looked right through us as if we wasn’t there, and he was grey. Then two ambulances and a paramedic car rushed to the house. They thought it might be epilepsy, but after tests, they still didn’t know what was causing the seizures."
Following an MRI scan, Ralphie was diagnosed with PVL. The diagnosis finally gave the family an explanation, but it also confirmed the life-changing challenges Ralphie would continue to face. Daniel said: "The white matter in his brain that controls everything, your movement, speech, thinking, eating, it’s permanently damaged. It was relief, but also anger, upset, and hurt because we just wanted people to listen to us."
Life with PVL
Today, Ralphie is non-verbal, has severe autism, is deaf in his left ear, lives with chronic lung disease and an unsafe swallow, meaning he can only eat a handful of soft foods. He also suffers from absence seizures and remains vulnerable to life-threatening infections. Only weeks ago, doctors feared he had sepsis after he was admitted to hospital.
Daniel said: "There have been a few times where doctors have come in and said, ‘be prepared because he might not make it through the night’. For those 36 hours while we were waiting for blood results, it was the scariest time of our lives."
Raising awareness
Despite everything he faces, Daniel says Ralphie refuses to let his condition define him. He said: "He is one of the cutest, most loving little boys. The smile on his face is unbelievable."
The family now hopes telling Ralphie’s story will encourage other parents to trust their instincts and help raise awareness of PVL, which Daniel says remains little known despite its life-changing impact. To support that mission, Daniel and Jamie-Lee will climb Snowdon overnight on August 28 to raise money for Alder Hey, while hoping to shine a spotlight on the condition and eventually establish a charity dedicated to supporting families affected by PVL. Daniel said: "He’s climbing a mountain far bigger than Snowdon every single day of his life."
