Little miracle as girl who was predicted to never walk takes her first steps

27 December 2023 , 09:04

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Lily was diagnosed with Sturge Weber Syndrome, a rare neurological disorder, as a baby

A little girl who doctors feared would never be able to walk took her first steps before Christmas aged two.

Alice Thomas and Dan Young's daughter Lily was diagnosed with Sturge Weber Syndrome, a rare neurological disorder usually involving a port wine stain birthmark, just 24 hours after she was born. The tot started coughing yellow mucus and stopped breathing at the NHS Worcestershire Royal Hospital.

Doctors were able to stabilise Lily in the hospital's Neonatal Intensive Care Unit (NICU) but diagnosed her with Sturge Weber Syndrome, after noticing the tot's birthmark - a layer of extra blood vessels - covered a part of Lily’s brain and it also affected the eye.

Medics told Alice and Dan, who are from Evesham, Worcestershire, there was a chance their daughter would never walk. However, she recently took her first steps, weeks before her third birthday and the festive season.

The tot stopped breathing hours after she was born in 2020

Mum-to-two Alice said: "After Lily was born, we were told she might never be able to walk, however, a few weeks ago, she took her first steps. 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."

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The youngster was born in December 2020 during the coronavirus pandemic, after what Alice described as a "textbook pregnancy". Complications when Lily stopped breathing, at around 18 hours old, therefore were unexpected and a tough time for both Alice and Dan.

Now Lily, pictured with a relative, is a happy, smiley youngster, and has defied doctors' expectations

MRI and EEG scans at Worcestershire Royal Hospital led to the diagnosis of the rare neurological disorder. Although Lily was discharged ten days later, her parents were given a breathing alarm to monitor Lily when she was sleeping. Recalling her trauma, Alice continued: "Dan and I were so worried about Lily. We were too scared even to close our eyes to sleep, so one of us was always awake with her. We hardly slept for weeks.

"We knew then that Lily’s head was small on scans because of the abnormalities in her brain caused by the extra blood vessels. 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. 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."

Alice Thomas and Dan Young, pictured with their daughters this Christmas, want to raise awareness of Sturge Weber Syndrome

Lily is cared for by multiple teams at NHS' Birmingham Children’s Hospital, who still treat her regularly with laser treatment to keep her birthmark healthy and with physio to help her to build strength. At ten days old, she was seen by its specialist eye department, as the port wine stain had caused Lily to have glaucoma in her left eye.

Joe Abbott, Paediatric Glaucoma Surgeon, performed procedures to remove a build-up of fluid in Lily’s eye. Mr Abbott said: “Lily’s surgery went well. We lowered the pressure in her eye. This allowed the surface layer of her eye to clear and take the pressure off her optic nerve to allow her to develop better vision.”

Due to the extra blood vessels causing abnormalities in her brain, Lily also suffers from epileptic-like seizures and muscle weakness on the right side of her body. Alice said: "As time went on, we learnt a lot about her condition and grew in confidence, but in May 2021, she had a reaction to sedation in a routine appointment and had a seizure. It completely knocked our confidence."

The family has praised NHS nurses and doctors at Birmingham Children's Hospital in the city centre (SWNS)

But the brave youngster has medication to control her seizures and has since been seizure-free and overcome many milestones, including her first steps. Her family is grateful for both NHS hospitals in supporting Lily through her journey. "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," Alice said.

And the mother of two has set up an Instagram account for Lily. It has led to her meeting other families, who have experienced Sturge Weber Syndrome and facial birthmarks. Alice added: "We surrounded ourselves with people who knew what we were going through and it was a massive help. We didn’t feel as alone. One Mum, Beth, whose daughter Daisy also has laser treatment for a port wine stain at the Children’s Hospital, reached out and we became fast friends. We could support each other through our similar experiences, and now Lily has a new best friend in Daisy."

Bradley Jolly