The disease affects the optic nerves and pathways of the eyes.

At present Jacob is undergoing his fifth round of chemotherapy to fight a secondary cancer.

He recently spent is 13th birthday in hospital and this time around could face up to 18 months of treatment.

Family Friend, Sam Morgan says he is “doing it tough at the moment”.

“The chemo is making him violently ill so now they are keeping him overnight after each treatment to administer medication and stop the vomiting,” she said.

Sam knows there is not a lot she can do to change this but is determined to help ease the financial strain Jacob’s battle places on his family.

“Heidi is my best friend.  Jacob is the bravest, sweetest and amazing kid I know.  They inspire me,” she said.

Heidi is Jacob’s Mum and along with his Dad, Nigel and younger sister Hannah they have raised over $50 000 for charity’s that have helped them along way under the banner of Team Jacob.

This includes $16 500 for Camp Quality and $31 000 for Harry’s House, a respite ‘home away from home” in Stockton for kids with cancer and their families.

“None of the funds raised have ever been used by the family,” Sam said.

And she should know as Sam is a long-term member of Team Jacob.

“They are a beautiful, humble, kind, giving people and it is time to give back to them,” she said.

Karen Patten wanted to find out how she could purchase some vouchers to cover the costs of things like parking and purchasing coffee at the John Hunter Hospital.

She knows expenses like this add up for the Moore family not that they would ever mention this.

So after talking about it with her husband, Karen sent a text message out to her friends asking how this could be done.

She discovered Sam had already started donating the proceeds of what has grown into her unofficial job, selling second hand goods on line, to the family.

From here the two women came up with ‘A Day for Jacob’.

“A Day for Jacob is going to be a very special event where this amazing young man is going to receive a big surprise,” Sam said.

She hopes it will lift his spirits and give him strength to keep fighting.

Sam and Karen also hope the day will generate much needed financial support for the Moore family to help them through this difficult time.

What started out as a family fun day at Glendon Hall has turned into a huge day of entertainment at the Singleton Showgrounds.

“After creating a Facebook page to get things going, we soon realised the hall would not be big enough. In a few hours we had 200 likes and now we have over one thousand,” Karen said.

“Businesses work for years trying to get this type of response.  We were overwhelmed and it shows how much the community cares about Jacob and his family. It looks like we will not have to pay for the use of the showground and we are hoping to get local radio station Power FM on board.  We can’t really afford the $1000 fee and have approached them about perhaps donating their services.”

So many people have offered their support, she said.

When it comes to getting down on paper what they have planned it is hard to keep up.

The day is scheduled to begin at 9am on Sunday, September 14 and will continue through to 3pm.

Some highlights of the day include a talent quest, market stalls, donate or dare to shave, the ‘Balloon Bloke’, food outlets, face painting, a chocolate wheel  and the list goes on.

Sam suggests bringing the family, a blanket and settling in for the whole day.

“It’s going to be a big day of big fun,” Karen explained.

The ladies are planning on having an auction and some raffles during the day.

“We would love any donations that could be raffled or given as prizes,” Sam said.

The determined pair also has another idea on the boil.

Karen says they would like to see every student in Singleton dress in Fluoro green and purple clothing on the last day of this term and make a gold coin donation to support the Jacob.

These are, of course Team Jacob’s colours and over the years have come to symbolise quest to raise money.

Money he hopes will lead to the discovery of a cure and to help others.

“It would be amazing to see this happen.  At the moment Singleton Public School and Saint Catherine’s Catholic College are on board,” she said.

“We are waiting to hear back from King Street and Singleton Heights Public School and still have to contact the small schools.”

We really want this to happen, Karen stated.

“These events will have such an impact on their lives and help them on their journey,” Sam said.

An uncertain and at times difficult journey but during this time they have always displayed great courage, strength and selflessness.

This was illustrated when Heidi accepted the Upper Hunter Steel Magnolia Award in November.

In her acceptance speech she said “life is not about waiting for the storm to pass, it is about learning to dance in the rain.”

For more information or to make a donation go to the Facebook page or email smorgo_1876@hotmail.com