Louise Barrell’s fundraising page.
Louise Barrell
My Story
Our Daughter, Emmie, was diagnosed in 2020 with type 1 Sturge Weber Syndrome - a rare, progressive vascular disorder characterised by a facial port wine stain birthmark, abnormal blood vessels in her brain, complex Epilepsy, risk of Strokes and eye abnormalities such as Glaucoma. As a family and with the help of an amazing multidisciplinary team at Great Ormond Street Hospital and locally in Cornwall, we also manage Emmie's many sensory processing issues, as well as her Neuro fatigue, low muscle tone and hyper mobility.
Without Sturge Weber UK, a charity that supports our family and others through new diagnosis', treatment, surgery and beyond, we would be utterly lost! The charity is run by incredible volunteers with first hand knowledge and access to specialist teams and contact details needed to help manage Emmie's multidisciplinary needs. Sturge Weber UK work tirelessly to promote research into the cause and treatment of Sturge Weber Syndrome as well as organising an annual family weekend away for Sturge Weber families in the UK. Their help is still invaluable to us two years on and we're so grateful.
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Target
£2,000
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Raised so far
£3,675
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Number of donors
81
My Story
Our Daughter, Emmie, was diagnosed in 2020 with type 1 Sturge Weber Syndrome - a rare, progressive vascular disorder characterised by a facial port wine stain birthmark, abnormal blood vessels in her brain, complex Epilepsy, risk of Strokes and eye abnormalities such as Glaucoma. As a family and with the help of an amazing multidisciplinary team at Great Ormond Street Hospital and locally in Cornwall, we also manage Emmie's many sensory processing issues, as well as her Neuro fatigue, low muscle tone and hyper mobility.
Without Sturge Weber UK, a charity that supports our family and others through new diagnosis', treatment, surgery and beyond, we would be utterly lost! The charity is run by incredible volunteers with first hand knowledge and access to specialist teams and contact details needed to help manage Emmie's multidisciplinary needs. Sturge Weber UK work tirelessly to promote research into the cause and treatment of Sturge Weber Syndrome as well as organising an annual family weekend away for Sturge Weber families in the UK. Their help is still invaluable to us two years on and we're so grateful.
