Sitting on the floor of a hospital consulting room, two-year-old Teddi Shaw appears oblivious to everything she is going through.
In 2022, Teddi became the first child in the UK to receive a pioneering gene therapy aimed, quite simply, at saving her life.Teddi spent months in hospital in Manchester during her treatment in 2022.MLD is a progressive, life-limiting disorder where children cannot produce a crucial enzyme, leading to a build up of toxic material in the brain.
Step forward to October 2023, and Consultant Paediatric Neurologist Dr Dipak Ram explained why Teddi's follow-up appointment is so important. She said: "To be part of Teddi's journey from the beginning of when she came to us, that first patient in the NHS to receive the treatment and to be part of that - and then still seeing her until she's eighteen years old, it just continues my passion and motivation to continue working with MLD."While Teddi's future appears bright, her family must live with a heartbreaking reality.
He continued: "She's still here and we're not going to make her feel different just because she is different."The girls' mother Ally is now adding her voice to wider calls for MLD to be included in the established UK-wide screening programme for new babies.
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