Joe was born with Angelman syndrome a genetic defect which is a deletion on his
chromosome 15, this in no way made his life limited.
Joe had many disabilities but as parents we were able to see through these as Joe
had his own individual character and this enabled us to embrace him with
Angelman syndrome, we had so much love and time to give him. Joe himself dealt with
all his unique and unrelated problems with Angelman syndrome through love, laughter
and a smile
He was happy and dealt with the other unique and unrelated problems with a smile
We do not know why Joe had the reaction know as SJS it could be triggered by a Drug
Although the first bad reaction was thought to be Drug related as he started a new
drug it was probably that over the two years and his final reaction was viral triggered
with his body fighting against other problems.
Most patients survive SJS but do not underestimate the effort or the medical care
SJS and lung failure due to on going issues after Joe had complete organ failure
with serious damage to his lungs & kidneys was the start of what two years later
became too much for him.
Some people my find these photos upsetting
After Joes complete organ failure from SJS the medical staff saved him however he
was left immune compromised. With a fix-portacath fitted and often going neutropenia
he was prone to infection.
Over 30% of the population carry MRSA but when you are not ill it would usually
not affect you in the same way.
We urge all visitors, families and contractors to wash there hands & use gels
it's not down to just hospital staff that normally always wash their hands.
Joe would not have fought off over 13 super bugs. Without the best of nursing care.
We must also assume that some of the infections where picked up outside of the Hospital
Joe was born with Angelmans Syndrome, as well as contracting Steven Johnson Syndrome
at the age of 3 which lead to complete organ failure and left his immune system
compromised. This lead to renal and lung disease.
Due to Joe's multiple medical problems he attracted attention from all over the
Joe's story is unique and has no answers on any one of his medical problem with
which he suffered.
At Joe's service Matt (Joe's Dad) said “Joe made the worst of times the best of
times with his smile and laughter” May 2008.