Health Facts

Angelmans Syndrome

Information about Angelmans Syndrome

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 and laughter.

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Steven-Johnsons Syndrome

Information about Steven Johnsons Syndrome

We do not know why Joe had the reaction know as SJS it could be triggered by a Drug or virus.

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 required.

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.

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Some people my find these photos upsetting


Information about Superbugs

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 environment.

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Information about complicated kids

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 world.

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.

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