Laura Cayzer from Skelmersdale had a normal pregnancy with her fourth child, Lennox, and was induced at 42 weeks of gestation. Upon his birth on September 3, Lennox appeared floppy, leading Laura to suspect something was wrong. Despite being told by doctors that Lennox was simply a “lazy baby,” Laura’s concerns were amplified by feeding and sleeping difficulties. At Lennox’s first home check, a midwife discovered that he had lost 13% of his birth weight, far more than was normal. This, combined with the feeding and sleeping issues, prompted Laura and her partner, Anthony Lewis, to rush Lennox back to the hospital on September 8.
The following day, while the couple was at home collecting belongings, they received a call that Lennox had stopped breathing and needed to be taken to Alder Hey Children’s Hospital immediately. Laura recalls feeling overwhelmed with fear and sadness during the taxi ride to the hospital. If not for a nurse named Annie, Laura believes Lennox may have died. After a week in the hospital, Lennox made a miraculous recovery and was eventually discharged on September 28.
Lennox’s diagnosis came from genetic testing at Liverpool Women’s Hospital. He was found to have the extremely rare PURA neurodevelopmental disorder, which occurs when one of a person’s two copies of the PURA gene on chromosome 5 do not function normally. Symptoms of the disorder include seizures, seizure-like movements, low muscle tone, feeding difficulties, and breathing problems.
Since being discharged, Lennox has gone from strength to strength and has regular check-ups with doctors. Although Laura and Tony know Lennox will be disabled, they do not know the extent of his disabilities. They do not want Lennox to be defined by his disorder and instead want him to define PURA.
Laura wants to encourage other parents to not take “no” for an answer if they suspect something is wrong with their child. She recalls feeling like a hypochondriac, but she knew Lennox was not right and it was important to get him checked. Lennox’s story serves as a reminder of the importance of trusting your instincts and advocating for your child’s health.
Lennox’s journey has been a rollercoaster of emotions, but through it all, his family has remained strong and supportive. Laura and Tony are grateful for the care Lennox received at Alder Hey Children’s Hospital and the support they received from their family and friends. They are now focusing on giving Lennox the best life possible and helping him to thrive despite his challenges.
