Sturge Weber Syndrome: Evesham girl finally learns to walk

Alice Thomas and Dan Young were told their daughter, Lily, may never walk again after she was diagnosed with Sturge Weber Syndrome, a rare neurological disorder, at birth. 

The three-year-old had come a long way since her diagnosis, with Miss Thomas revealing that she was too scared even to sleep when Lily was a baby in case she stopped breathing.

Alice Thomas and Dan Young with their two daughters. (Image: Birmingham Children's Hospital)Sturge Weber Syndrome is usually characterised by a port wine stain birthmark which covers the forehead or eyelid.

The birthmark is a layer of extra blood vessels that can affect the eye and cause epileptic-like seizures and muscle weakness. 

Medication has meant that Lily can now control her seizures and has since been seizure-free and overcome many milestones like walking.

Lily after she was born. (Image: Birmingham Children's Hospital)"After Lily was born, we were told she might never be able to walk, however, a few weeks ago, she took her first steps," said Miss Thomas.

"To see her walking was the most amazing feeling. She has overcome so much at such a young age.

"Despite everything that's happened to her, Lily is a happy, smiley little girl who loves playing with her big sister. She's continuing to defy all expectations."

Lily has defied the odds and took her first steps. (Image: Birmingham Children's Hospital)Lily is cared for by multiple teams at Birmingham Children's Hospital, who treat her regularly with laser treatment to keep her birthmark healthy and with physio to help her build strength.

"It was frightening, and it was really hard for her big sister Chloe, who was four at the time and couldn't understand why her sister wasn't home. 

"Dan and I were so worried about Lily. We were too scared to close our eyes to sleep, so one of us was always awake with her. We hardly slept for weeks. 

Lily with her big sister Chloe. (Image: Birmingham Children's Hospital)"However, in time, we grew more confident. Lily's diagnosis was actually a blessing during a dark time. She was seen quickly by the right people." 

"We can't thank the teams across both hospitals enough. We haven't had one negative experience.

"The care Lily received was so fast and efficient despite the immense pressure the staff were facing during COVID-19. We are so grateful to everyone."