Joe's Story

When Joe was born his parents had no reason to be concerned for his health or well being. He then contracted meningitis at a week old which we believed was the reason for his delayed development.

He was eventually diagnosed with Angelmans syndrome. Despite this Joseph was a happy 3 year old.

He had experienced bad health throughout his short life, but nothing compares to the horror of Stevens-Johnson Syndrome.

The severity of the SJS had taken its toll on Joe's health.

Dad Matt Way tells Heart about his son

Joe had lost all his nails and had been left with chronic renal failure, chronic lung disease,(relying on oxygen and VPAP) dry eyes, bone marrow problems.

This meant he required regular blood transfusions and he was also prone to infections and required weekly blood tests to monitor his kidney function.

They had night and day respite care at Home but Joe was always to poorly to make it to Little Bridge House which is the children’s hospice in Devon.

Listen Here: Matt way talks bout the role of Children's Hospice South west

We have so many friends who where inspired by Joe as he never cried always had a smile and could make you feel better with one hug even though he had so many daily problems to fight with.

Joe was born on the 5th September 2003 and passed away in his parents arms on the 7th May 2008.

Helpful links:

Children's Hospice South west web page http://www.chsw.org.uk/

Joe Way web page http://www.joeway.co.uk/

Assert Angelman Syndrome web page http://www.angelmanuk.org

Stevens-Johnson Syndrome web page http://www.sjsupport.org

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