Hi my name is Donna,i have 2 boys both with ALD Shaun the oldest at 17yrs and Lee the youngest at 12.
Both boys were diagnosed in march 98. Lee was the first to be diagnosed after going into Addisons crisis Jan 98, both boys are on steroid replacement.
After lee went into crisis everything started to go down hill pretty quick, after that there were a lot of changes including school Lee became very hyperactive, also his intellectual ability declined very quick he was also having seizures, within a couple of months he was double incontinent and his speech was getting less and less, his food was having to be liquidised or mashed, eventually we had no other option than to go for a gastorostomy, in the mean time Lee was having problems with motability he first started with splints but he was having so much pain we had to remove them altogether.
At present lee goes to a special needs school were he is looked after extremely well and has his own nursery nurse called Judith, Lee has suffered so much with pain including 2 dislocated hips and severe stomach and bowel problems, he requires an awful lot of medication including morphine.
Shaun also attends the same special needs school as Lee at present Shaun has Addisons and learning difficulties, Shaun also was born with a very rare mouth deformity, he only has a very small tongue and a very high palate he has had numerous operations 2 remove a curtain of skin from the the back of his throat to make eating and breathing more easier.
He also had a traceostomy and gastrostomy from age 2, they have now been removed, Shaun has found the past few years very hard and has not coped very well with ALD in the family, he kept asking am I going to get ALD like lee, I kept telling him no even though I don’t know myself, but now that he’s coming up for 18 next month he’s a lot better at coping.
From diagnosis I’ve been on a emotional rollercoaster lots of tears and sleepless nights but my 2 boys are sill with me today, love 2 all ALD sufferers.