Tributes have flooded in for a 12-year-old boy who died from a rare genetic neurological syndrome.
Josh Jones, from Warrington, was diagnosed with a rare condition called FOXG1 Syndrome -a rare neuro-developmental disorder caused by a mutation of the FOXG1 gene. This impacts brain development and function.
Mum Kate Jones described her son as a "lovely, lovely boy" with the "most amazing smile". After the ECHO published Josh's story, tributes have poured in for the 12-year-old.
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Writing on the ECHO's Facebook page, Caroline Suzanne Reeve said: "Sad news Love to all his family and friends such a beautiful smile RIP Josh." Martina Jones added: "Rest in eternal peace young Josh. My deepest sympathy to all his family and friends."
Betty Williams also said: "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."
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 for him.
Kate said: "He loved lights and sensory. When he was at Claire House he could access their sensory room and at times hydrotherapy and music therapy."
Although he suffered from many medical needs, Josh was an incredibly happy boy. Kate added: “He was a lovely, lovely boy, a lovely son. Much, much, much missed.
“He had a fantastic bond with his younger brother, although cognitively he struggled and he couldn't talk, he and Seb had an amazing bond. Seb helped care for Josh and Josh clearly adored Seb.”
Not only did Josh benefit from Claire House, but so did his brother Seb, who has been going to the hospice with his family since he was 12 weeks old. Kate spoke of how it is essential that Seb gets to spend time with other siblings in the same position as him without having “to worry about their brother or sister.”
Kate told the ECHO that even after Josh’s passing, their family continue to receive invaluable support from Claire House, she said: “We were able to access Claire House after Josh had passed using their butterfly suite which is a suite where children who have passed can go and stay and their parents and family can visit them and be with them. The time was really important to us as Josh passed so quickly.
“They’re there throughout, not just when your child is alive but when you’ve lost them. They’ll be there as long as we need them, we know we can just text or pick up the phone and speak to someone.”
Josh’s parents are now working hard to raise as much money as possible for Claire House, the Wirral children’s hospice that offered invaluable support to Josh and his family throughout his life and after.
Kate said: “As a parent, you don’t want to hear the word hospice because you associate it with the child passing away, and death and losing a child. When we were recommended Claire House we didn’t want to think about that but when we visited we realised how warm and friendly it was, it was a happy place full of fun and laughter, it’s not at all scary.”
So far, they have raised money through a sports day collection at Seb’s primary school, and the family’s good friend Mark Ingarfield will be running the London Marathon in memory of Josh and to raise as much money as possible.
Kate said: “We wanted to give something back. It costs over £9,000 a day to run Claire House and they’ve got a huge demand on their resources and offer amazing support for families like ours.
“If you raise enough money to pay for a day then they’ll recognise that with your child’s name. We’d like to pay for a day in Claire House in Josh’s memory.”
By May 17 next year, on the anniversary of Josh’s passing, Kate hopes to have raised £9560 for Claire House in her son’s memory. Kate added: “I’m not sure if we’re going to make that but we’re going to try as hard as we can.”
More information about the fundraiser can be found online here .
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