Cohen Harris (8) launched an appeal in Tuesday’s Lincolnshire Free Press for the Motor Neurone Disease Association which supports people with the disease.
The words went to press on the day his grandfather Mick Smith died at Tanglewood Nursing Home in Spalding, aged 65.
Mum Hannah Harris had explained how Cohen had watched his grandfather lose the ability to move and talk in just five months of being diagnosed.
She said: “Launching the appeal in the Free Press was a way of keeping busy and coping.
“He was thrilled when he saw his story printed.
Now it’s so much more important to understand about Motor Neurone DiseaseHannah Harris
“When his grandad died he took a day off, but on Wednesday he was back at Spalding Primary School planning to give a talk on Motor Neurone Disease.
“He’s always been a kind boy. Once he gave up his pocket money for a year to sponsor a tiger.
“Then he wrote to the Prime Minister of Australia against shark culling.
“His grandad would have been so proud of him.”
Mr Smith was a carpenter in Essex until he retired. He moved to Long Sutton to live with his other daughter, Brenda Woodhead, until he was diagnosed with Motor Neurone Disease and was taken in at Johnson Community Hospital in Spalding. As he deterioted he was transferred to Tanglewood Nursing Home.
Hannah said: “Now it is so much more important that people understand about the disease and money is raised to help those who suffer it communicate as long as possible.”
Cohen is planning to hold a sponsored silence at Spalding Primary School on Tuesday, June 30. Anyone who would like to support him can make a donation at www.justgiving/Hannah-Jo