In 2020, our beautiful little Tilly joined the world. Born 9 weeks premature, we knew we had a bumpy road ahead of us, however we never realised what lay ahead of us and just how much our lives would be turned upside down.
At 2 weeks old Tilly was diagnosed with Periventricular Leukomalacia (PVL), a type of brain injury affecting the white matter around the ventricles, typically occurring as a result of a lack of blood or oxygen to the brain. The doctors gave no words of reassurance and instead told us to take Tilly home and enjoy her.
Tilly had a rocky ride through NICU and later head scans revealed the PVL had worsened and we were dealing with a severe brain injury. When Tilly was discharged from the NICU, we were told that a diagnosis of severe Cerebral Palsy was nearing certainty.
In 2021 Tilly was diagnosed with Spastic Diplegic Cerebral Palsy. She also has airway disorders and gastrointestinal issues. She is a frequent flyer to hospital, and the strongest little girl we know
In spite of the challenges, Tilly is defying the odds. She eats orally, has a vocabulary of around 70 words, and the most infectious smile. At 29 months, she has the physical ability of a 6–9 month old. She depends on therapies and equipment provided by both the NHS and private professionals across the UK to help her progress physically and manage her symptoms to ensure she has the best chance to live a life with no limits