JOSHIES STORY:
Josh is 9yrs old and was born with a rare genetic brain condition called Pontocerebellar Hypoplaysia Type 2, Josh has quadraplegic cerebal palsy, he is fed through a tube into his bowels and he has a gastric free drainage bag to prevent his stomach refluxing and making him choke, he has severe seizures and breathing apnoeas daily. giving him a life prognosis of just 5yrs. Thankfully Josh had a machine placed into his abdomen at 4yrs old which supplied medication to his spinal cord to relieve pain and muscle tightness. .. this prevented high volumes of relaxant medication being used - which they believe gave him the extra years he's had beyond his prognosis.
Unfortunately in December 2016 it was discovered that the pump was no longer working and had to be removed. The only other non medicated route was for Josh to have a spinal operation costing £10,000 which Josh's Family privately funded.
Unfortunately Josh has still not been discharged from the hospital due to lots of other complications.
Josh's Family currently live in a house which isn't suitable for Josh's disability, mum is still carrying him around, up & down the stairs etc...
Josh has just had the final results of many test that states he must be on oxygen at home, they urgently need help to make their house suitable so Josh can come home to his family.