{"id":37330,"date":"2025-08-01T11:29:08","date_gmt":"2025-08-01T11:29:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/37330\/"},"modified":"2025-08-01T11:29:08","modified_gmt":"2025-08-01T11:29:08","slug":"fundraiser-for-rayleigh-child-with-extremely-rare-genetic-condition","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/37330\/","title":{"rendered":"Fundraiser for Rayleigh child with extremely rare genetic condition"},"content":{"rendered":"

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Twenty-one month old Dusty Gunn who lives in Rayleigh, Essex, has a genetic condition so rare she is believed to be just one of around 400 people in the world with the condition.<\/p>\n

Around the size of a nine-month-old, she has very little movement, hearing loss, suffers from seizures and is fed via a feeding tube. Because the condition, Pyruvate Dehydrogenase Deficiency (PDHI) is so rare, it is uncertain what the future holds for Dusty, though children with the condition usually have a limited life expectancy.<\/p>\n

Her family is determined she is as comfortable and happy as possible, and are raising funds for physiotherapy and equipment.<\/p>\n

Grandmother Kerry Etherton, 64, who lives in Bridge Street Hamlet in Suffolk and works as an administrator in her son Billy Gunn\u2019s heating and ventilation company said: \u2018We\u2019ve just held a sponsored walk from Alpheton Village Hall to Lavenham and back \u2013 around 50 or 60 people and raised more than \u00a36,000 \u2013 with more still coming in!\u2019<\/p>\n

\u2018People have been so generous. We want to do all we can for Dusty, as any family would. But it all costs money.\u2019<\/p>\n

\u2018Physio sessions are \u00a3100 a time \u2013 what she gets on the NHS is very limited \u2013 but it\u2019s really helping her. She is able to move her hands a little now which she wasn\u2019t able to before.\u2019<\/p>\n

\u2018We want to buy a bespoke seat which will be made for her and help keep her upright which in turn is likely to help her digestion \u2013 that costs \u00a31,500. We don\u2019t know what else she will need, but everything will go towards giving her the best life she can possibly lead.\u2019<\/p>\n

Dusty lives with Dad Billy, 34, Mum Rosie, 30, sister Florrie, 6, brother Billy Junior, 4, and baby Ronnie, just one week old.<\/p>\n

Kerry added; \u2018Dusty has a lot to deal with \u2013 she is in and out of hospital and we don\u2019t know what the future holds. She loves loud sounds and colourful things and giggles when her Mummy or Daddy make funny noises for her.\u2019<\/p>\n

\u2018We have been overwhelmed by the generosity of our friends, family, colleagues and community and would like to say a huge thank you. We will be planning more fundraisers in the future and will always be grateful for every penny received.\u2019<\/p>\n

The family is being supported by children\u2019s charity Tree of Hope, which helps families raise money for children and young people like Dusty for medical treatments and healthcare services not freely available to them through the NHS and social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Dusty\u2019s benefit from gift aid, corporate support while also providing donor reassurance.<\/p>\n

Tree of Hope CEO Becky Andrew said: \u2018We wish Dusty and her family all the best with their fundraising activities. We are pleased to be supporting them to give them the support in reaching their fundraising goals.\u2019<\/p>\n

To learn more about Dusty or to donate to her fund visit https:\/\/www.treeofhope.org.uk\/get-involved\/childrens-campaigns\/dustys-story\/<\/p>\n","protected":false},"excerpt":{"rendered":"Twenty-one month old Dusty Gunn who lives in Rayleigh, Essex, has a genetic condition so rare she is…\n","protected":false},"author":2,"featured_media":37331,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[25],"tags":[64,63,336,128],"class_list":["post-37330","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-au","tag-australia","tag-genetics","tag-science"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/37330","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=37330"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/37330\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/37331"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=37330"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=37330"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=37330"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}