Alex Hoare has a rare incurable genetic disease called neurofibromatosis type 2, known as NF2, which causes benign tumours to grow in his brain, eyes and spine.
This means Alex, from West Leigh, has issues with his sight, hearing and balance due to two major brain tumours, a mass in his spine and small growths behind his eyes, as well as early onset cataracts.
The youngster and his family have launched a fundraising campaign to try and make some fun memories together before Alex loses his sight or hearing or his condition develops further.
Alex lives with his dad Shaun, who cannot work due to being Alex’s full-time carer, his mum Vicky, who has chronic sleep disorder narcolepsy, and his little brother, eight-year-old Shauny.
Alex said: ‘I’d like to do more stuff with them. I just enjoy being around them and they’re the best family I could ask for.’
The family hopes to gather enough funds to be able to treat Pokemon-obsessed Alex, whose dream career would be in video game development, to some days out at places like Butlins, Harry Potter Studios and Legoland.
The trips would have to fit in around Alex’s chemotherapy sessions. He was the youngest person with NF2 in the UK to have Avastin chemotherapy after beginning his treatment last year.
Any money raised over the family’s target will be used towards adaptations to make Alex’s life easier as his condition may mean he needs hearing aids and other equipment.
Dad Shaun, 33, said: ‘We would like to create some amazing memories with him before he gets anything new or it’s too late. We also want to raise awareness for other people with NF2.’
A decrease in income since Shaun had to leave his job to care for Alex hasn’t been easy for the Hoare family, but they have been very grateful for help from volunteers at Leigh Park organisations FreeBank Po9 and FoodBank Po9.
Alex is a much-loved member of the family and enjoys spending time with his brother Shauny and playing games together.
Mum Vicky, 34, said: ‘Alex has a massive heart. As we didn’t have a lot of money, we asked what he wanted for Christmas and he said I’m OK as long as I’ve got you.
‘Our biggest memory was the one time we managed to go away because someone in the family treated us to a holiday to Butlins.
‘He handles the whole situation with NF2 and chemotherapy really well. He is very adult in thinking. After every chemo treatment he thanks the nurses.’
Alex said: ‘It hurts a bit to get the chemo but I’m getting used to it. The nurses put in so much effort and they aren’t treated right for it, and cleaners really deserve more praise for what they do.’
Shaun and Vicky have raised money for various charities over the years including Macmillan Cancer Support and stillbirth and neonatal death charity Sands after their third son Kyle died just a few hours after being born.
Visit gofundme.com/AlexNF2 to read more and donate.