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‘I’ll always love him however he grows up to be’ – Lucy Mort on her first born diagnosed with rare genetic disorder
20/12/2024
Lucy Mort, a mother of two (soon to be three next month), speaks to Bill Woods about her first born Teddy, who was diagnosed with CTNNB1 syndrome.
CTNNB1 syndrome is a rare and non-inherited genetic neurological disorder that begins to manifest in early infancy as missed milestones and developmental delays. It can lead to severe impairments, affecting nearly every aspect of life, from the ability to speak and walk to eating and social engagement.
This month, Lucy and her husband Peter, have kicked off their latest fundraiser to support the CTNNB1 gene therapy clinical trial planned for 2025.
For more and to donate visit – https://www.gofundme.com/f/Teddy-CTNNB1
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