Alfie is 8 years old, sonic the hedgehog mad and has recently been diagnosed with a disease called X linked Adrenoleukodystrophy, this disease affects 1 in 17,000 boys. Early signs of ALD are the same as adhd, Alfie had been suspected adhd since age 4. Unfortunately after regressing with his physical and mental skills in September 21 an MRI scan and genetic testing confirmed that Alfie had quite advanced ALD and would not be suitable for treatment. Within 3 months Alfie lost all his physical skills and is now totally dependant and relies on his wheelchair and family to get out and about. As this disease is genetic Alfies two brothers William (11) and Noah (4) have had to undergo genetic screening and brain MRI, Both boys have been found to have the same bio chemical markers as Alfie and will be scanned every 6 months to monitor changes in the brain. Noah already presents with adhd behaviour and is being monitored by consultants very closely! Bittersweet is that William and Noah will both be found bone marrow matches and will go straight for transplant if cerebral changes occur, this will not cure any existing damage but would stop future damage occurring. All 3 boys also suffer with addisons disease meaning they are steroid dependant for life, Addisons can go hand in hand with ALD. As it stands Alfies parents are trying to find a suitable home and disability car so that they can enjoy Alfies time as the loving family they are. Alfies condition is now life limiting with a prognosis of 2-4 years after the onset of physical deterioration. We are trying to raise money to help get Alfie any equipment not provided by local authorities and to make precious memories as a family while Alfie can still appreciate new experiences. Thank you all so much xx