The family of a little boy with an fatal disease have spoken of their mission to make every moment count.
Four-year-old Ollie Carroll has been diagnosed with Late Infantile Batten Disease.
The degenerative condition will rob him of his speech, mobility and eyesight as he gets older.
Tragically Ollie, from Poynton, is unlikely to survive past 12.
The extremely rare condition affects only five or six children in the UK each year.
Ollie’s mum and dad Lucy, 29, and Mike, 31, are now trying to come to terms with his diagnosis.
They have created a wish list to make Ollie’s life as good as they possibly can.
Lucy said: “This cruel disease will rob our beautiful baby boy of the ability to walk, talk, swallow, play and see. There is currently no cure for this disease. As a family we are completely devastated and are trying to come to terms with this awful news. We are determined to do as much as we can to make sure that Ollie enjoys life as much as possible and raise awareness of this disease.”
Ollie’s wish list includes a trip to Disney World Florida, a ride in a helicopter and to meet his favourite players from Liverpool FC.
Ollie’s health became a worry six months ago when he suffered a seizure at home.
It was initially diagnosed as epilepsy, but in February a genetic test revealed Ollie’s tragic diagnosis.
Since then family and friends have rallied in support, fundraising to help fulfil Ollie’s wish list and buy specialist equipment and fund future research into Batten Disease.
A social media campaign dubbed ‘Ollie’s Army’ has gained support from celebrities and sports stars.
As well as dealing with Ollie’s seizures which occur up to 14 a day and last around five minutes at a time, Lucy and Mike, who grew up in Bollington, have struggled with the lack of information on the disease.
They also have an anxious wait to test Ollie’s two brothers, aged six and eight, and his two-year-old sister for the disease.
Lucy added: “Because it is so rare we have had to become experts and find ourselves explaining it to doctors, which adds to the stress.
“Thankfully, we have been received great support from the Batten Disease Family Association, as well as family and friends.
To donate visit olliesarmy.co.uk
If you are fundraising to help brave Ollie and want to publicise the event email stuart.greer@menmedia.co.uk
