Jenson Whitehouse, from Churchdown, was diagnosed with the rare muscle-wasting disease, Duchenne Muscular Dystrophy (DMD), on his first birthday last year.
His parents, Garry and Chantal were given the devastating news in December, after they realised Jenson had trouble sitting up and was crawling differently from other babies.
But instead of slumping their shoulders, the family has rallied together to try and set up a charity to find a cure.
“It was unbelievable when we heard the news, we were in shock,” Garry said.
“We couldn’t believe our boy could have DMD, and there were a lot of questions which people couldn’t answer. We were at a loss.
“We didn’t know who to turn to, and what the facts of the condition were.”
The disease, which affects one in more than 3,600 boys in the world, causes the muscles to degenerate, which means the patient will have trouble walking, or in most cases, have to use a wheelchair.
But Garry is hopeful a cure could be on the way, and he plans to boost the chances of that happening by raising money for research.
The family wants to set up a charity called Jenson’s Journey, to help fund that research.
And the community has rallied around Jenson, who has three older siblings, Estelle, 12, Harrison, 10 and Tiarna, seven.
More than 300 people from the village gathered for a sponsored walk and raffle near St Andrew’s church in Churchdown on Saturday.
The event raised more than £3,000 for the charity, with more still to come in.
Garry said he was thankful for the support of his friends and neighbours.
The IT manager with Gloucestershire Police said: “It was quite incredible. We didn’t expect that many people, and I was astounded and speechless at that time.
“It really goes to show what a tight-knit community Churchdown is, and we are very thankful.
“Jenson is very playful, and in our arms you couldn’t tell him apart from other children. He is very smiley, happy and cheeky.”
The toddler is brought to Frenchay Hospital in Bristol about twice every week, and the family has pulled together to help the cause.
The children made bookmarks to sell, and will be holding a cake sale to raise more money and awareness.
“I love my children, and we are very proud of them. They always put Jenson first. We don’t know about the future, but we can hope,” Garry said.
Read more: http://www.gloucestershireecho.co.uk/Churchdown-families-rally-toddler-Jenson/story-20886619-detail/story.html#ixzz305DDGGqs