A family has spoken of their heartbreak after their 12-year-old son died after suffering from a rare neurological condition.
Josh Jones, 12, passed away from "a very acute, sudden sepsis episode” on May 17 after being diagnosed with FOXG1 Syndrome several years earlier, reports the Liverpool Echo.
The condition, which is thought to affect only 300 people in the world, severely impacts brain development and function.
Detailing the medical challenges Josh had overcome in his life, his mother Kate Jones 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."
The family had used Claire House, a children's hospice in Wirral, s ince Josh was two-years-old, which Kate said provided him with much-needed respite support throughout his life.
Josh was able to spend valuable time with his younger brother Seb at the hospice, where the pair developed a "fantastic bond" despite him not being able to talk.
She added: "He loved lights and sensory. When he was at Claire House he could access their sensory room and at times hydrotherapy and music therapy.
“He was a lovely, lovely boy, a lovely son. Much, much, much missed."
Kate also revealed that the family continue to receive support from the hospice following his untimely death, including the use of a room named the butterfly suite where family can visit and spend time in his memory.
The parents are now working hard to raise as much money as possible for Claire House.
So far they have taken a sports day collection at Seb’s primary school, while the family’s good friend Mark Ingarfield will be running the London Marathon next year.
By May 17 next year, which will the anniversary of Josh’s passing, Kate hopes to have raised £9560 for Claire House in her son’s memory, and said the the family is "going to try as hard as we can.”
More information about the fundraiser can be found on the Justgiving page.
