James Batton, from Whiteleas, was diagnosed with Batten disease, a rare disease affecting the nervous system, in January 2020, and his family were told there was no cure.
To help prolong the symptoms of the illness, James’ parents, Diana and Dean Young, visited Great Ormond Street Hospital, London, every two weeks so James could receive life-saving treatment.
Now James’s neighbors and the community of South Tyneside are coming together to help James and his family create lasting memories by throwing a charity evening in James’ honor to raise money for a trip to Disneyland Paris and to help with travel expenses.
The charity evening, hosted by several of James’ neighbors, will feature a DJ, live entertainment and a raffle, to support the family.
Organizer Zana Louise Martin said: “We would love to get as much as we can and help James and his family create lasting memories.
“We see James’ family travel to London every two weeks and know how difficult it is for them, so we wanted to help out in any way we could.”
Batten’s disease is a rare nervous system condition that affects speech, walking and memory and the family were told James was unlikely to reach his 13th birthday.
Diana and Dean first realized something was wrong when James was two and started having speech problems, before developing behavioral issues and struggling with balance and coordination.
James was on the waiting list to be tested for autism when he had his first seizure and finally in November 2019 after months of battling James was admitted to RVI in Newcastle and two months later received the devastating diagnosis.
The charity night will take place on Saturday November 27 at the Whiteleas Social Club, with tickets costing £5 and all funds raised to support James and his family making amazing memories.