'Lovely, lovely boy' with 'the most amazing smile' dies aged 12 after diagnosis of rare neurological condition
22.08.2022 - 15:35
/ manchestereveningnews.co.uk
Tributes have poured in for a 12-year-old described by his mother as a "lovely, lovely boy", who died from a rare genetic neurological syndrome. Josh Jones, from Warrington, was diagnosed with the disorder called FOXG1.
The condition is a rare disorder caused by a mutation of the FOXG1 gene that impacts brain development and function. Josh's mother, Kate Jones said her son had the "most amazing smile".
Tributes have poured in for the 12-year-old, the Liverpool ECHO reports. Writing on Facebook, Caroline Suzanne Reeve said: "Sad news Love to all his family and friends such a beautiful smile RIP Josh."
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Martina Jones said: "Rest in eternal peace young Josh. My deepest sympathy to all his family and friends." Betty Williams added: "So sad RIP little man Thinking of his family at this sad time YNWA."
Celine Marshall said: "Aw gorgeous boy indeed completely heartbreaking." Linda Carter added: "Fly high with the angels Josh, deepest sympathy to those who loved you."
Mum Kate spoke of how he went through a lot physically in his lifetime and said: "He had a lot of hospital stays and medical needs. He was non-verbal and wheelchair-dependent, he relied on people for everything, but he had the most amazing smile.
"FOXG1 affects brain development and he was missing parts of his brain so he needed support with everything. That had a huge impact on our family and other families like us. We wouldn't change it, we miss him and that part of our life a lot."
Claire House, a children's hospice in Wirral, "provided respite support throughout his life" Kate said. The family have been using the hospice since Josh was two-years-old and it soon became invaluable when caring