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158 Ewell Road
Heartbreak as family told Issie, 10, may not make it through winter
A close-knit family has been told that their 10-year-old daughter may not make it through this winter.
Refsum’s disease sufferer Isabelle Hopkins is deaf, blind and has kidney and liver problems, a dislocated hip and problems with her muscles that stop her from living life like other children. Issie was born with the degenerative genetic condition but has defied all odds after frequently coming in and out of hospital over the last two years.
Children with refsum’s disease can live up to about 13 years but as Isabelle’s condition has continued to worsen her treatment has been stopped. Mrs Hoogewerf who has two other young children – Giles, 2 and Pippa, 1, with her husband Bevan, said the family who live in Berrylands, and own Langley’s restaurant in Surbiton, were having a difficult time.
Even though Isabelle spends a lot of time in bed, she still enjoys music therapy with the sounds of Beethoven on the piano providing vibrations for her to take in. She also continues to swim regularly at her hospice school in Putney and sees her birth father every week. The Hoogewerf’s spoke about Issie to ask for support for children with genetic conditions through charity Genetic Disorders UK. Genetic Disorders UK is calling on people to celebrate the 18th birthday of Jeans for Genes day on Friday, September 20 by donning some denim and donating money at jeansforgenesday.org.
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