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\n Seven-year-old Willow Hodder has a rare condition that means she can\u2019t eat more than 3 grams of protein every day \u2013 less than you\u2019d find in a single slice of white bread.\n <\/p>\n
Willow, from Bromborough, has an inherited metabolic disorder called Phenylketonuria (PKU), meaning she is unable to digest the amino acid phenylalanine found in protein-containing foods.<\/p>\n
Without strict diet management, PKU can lead to intellectual disability, seizures, behavioural issues and serious mental health problems.<\/p>\n
Thanks to the extraordinary dedication of her parents, Chelsea and Stewart, Willow is thriving \u2014 but only by following an extremely restrictive low-protein diet, relying on prescription-only foods and protein substitutes and having her phenylalanine levels monitored every week.<\/p>\n
Chelsea recently took part in a parliamentary drop-in event organised by the National Society for Phenylketonuria (NSPKU), where Justin Madders, MP for Ellesmere Port and Bromborough, pledged his backing for the charity\u2019s\u00a0Hungry for Change\u00a0campaign. The campaign includes a call for fair access to new treatments that could transform life for people with PKU.<\/p>\n
Chelsea, 32, a contracts manager at Bromborough-based Heightsafe, explained:<\/strong> <\/p>\n \u201cWe welcome this kind of support for quicker access to any drug that will work for the community and for Willow. One of the drugs, Kuvan, took 12 years to be approved for NHS use \u2014 but you must be genetically compatible with it and, sadly, Willow wasn\u2019t a match.<\/p>\n \u201cSepiapterin is the newest drug and could help around 60% of people with PKU, but again, you must genetically match it \u2014 and we already know it won\u2019t work for Willow.\u201d<\/p>\n However, she points to a promising new medication, JNT-517, currently in clinical development:<\/strong><\/p>\n \u201cNo matter the age or genetic type, this one should work for anyone with PKU. UK trials are due to start in 2026, after which it will need approval from NICE before it\u2019s available on the NHS.\u201d<\/p>\n Life for the family is far from easy. Chelsea and her husband Stewart, 36, a clean and clearance operative at Magenta Living who also lives with PKU, spend hours every week weighing, measuring and planning meals. Even vegetables contain protein, so quantities must be controlled with precision. Eating out is impossible. Willow also needs a weekly blood test at home so the dieticians at Alder Hey can adjust her diet accordingly.<\/p>\n It\u2019s a huge strain on the whole family, including Willow\u2019s 12-year-old sister Grace, who doesn\u2019t have PKU but often has to eat separately to avoid upsetting her younger sibling.<\/p>\n Yet despite the challenges, Willow\u2019s energy and resilience shine through:<\/strong><\/p>\n \u201cShe\u2019s 1,000 mph \u2014 amazing, considering her diet. Not sure where she gets her energy from!\u201d Chelsea said. \u201cShe\u2019s on target at school and doing well. It\u2019s not holding her back at the moment, but it could if it wasn\u2019t managed. PKU can have neurological effects, so sticking to the diet is essential. It works \u2014 it\u2019s just very restrictive and affects her quality of life.\u201d<\/p>\n Justin Madders MP, who met Willow during a visit to Co-op Academy Woodslee in Bromborough, said:<\/strong> <\/p>\n \u201cIt was lovely to meet Chelsea in parliament and her daughter Willow on a visit to her school. She seems like a real live wire despite all the challenges she faces.<\/p>\n \u201cI\u2019m proud to back the NSPKU\u2019s campaign for fair access to the care, dietary products and new treatments that families like Willow\u2019s urgently need.\u201d<\/p>\n Pictured –\u00a0Willow\u2019s mum Chelsea Hodder, from Bromborough, met Ellesmere Port and Bromborough MP Justin Madders after she took part in a parliamentary drop-in event organised by the National Society for Phenylketonuria (NSPKU).<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"Seven-year-old Willow Hodder has a rare condition that means she can\u2019t eat more than 3 grams of protein…\n","protected":false},"author":2,"featured_media":619856,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8815],"tags":[45552,748,758,8894,393,4884,179,3462,269,12,9440,16,15,8881],"class_list":{"0":"post-619855","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-liverpool","8":"tag-advertise","9":"tag-britain","10":"tag-chester","11":"tag-ellesmere-port","12":"tag-england","13":"tag-great-britain","14":"tag-liverpool","15":"tag-local","16":"tag-music","17":"tag-news","18":"tag-radio","19":"tag-uk","20":"tag-united-kingdom","21":"tag-wirral"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/115683511135072423","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/619855","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=619855"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/619855\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/619856"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=619855"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=619855"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=619855"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}