A LITTLE boy who has an extremely rare brain condition which means he is unlikely to survive past childhood is the inspiration behind an incredible charity mission.

Frankie O'Connor was born with type two Pontocerebellar hypoplasia (PCH) which causes him to have seizures, limited mobility and no way of communicating.

When Basingstoke mum Nikki Savings met 20-month-old Frankie, she decided to do something to raise awareness of PCH, and funds for The Joshua Deeth Foundation, which supports children and family's with the condition.

The 31-year-old finance manager, from Lychpit, is now preparing to run seven marathons in seven days, starting on August 22.

She said: "I met Frankie and his family in July 2014 at a friend's barbecue and was so touched by his story and how lovely his family was, I decided that I wanted to do something to help and make a difference."

The mother-of-one has run marathons in the past, and so knew she needed a tough challenge to encourage people to sponsor her.

She said: "It needed to be something extreme to get people to support me and make a difference. I'm blown away by the support. Everyone wants to help and I've had offers from people to run alongside me for part of it.

"I think it's going to be really hard. The only thing that will get me through is the people who are helping me and I know how much it's going to give to the charity and help Frankie's family. They don't know if their little boy is going to live until he's five."

She added: "My reason for doing this is for Frankie, so that everyone knows what a special little boy he is and to ultimately make my own son super proud of his mummy."

Frankie's parents, Debbie and James, found out when their son was just a few weeks old that he had PCH.

Thirty-five-year-old Debbie, from Kempshott, who also has two daughters, said her son has already endured15 stays in hospital since he was born and relies on constant care and medication.

She said realising her little boy will probably not live beyond the age of 10 was "devastating" adding: "The first 18 months were hard because he was so poorly and it was understanding him and how to cope with him.

"It's still hard. Some days are better than others. We have more good days now and you have to get on with things, I have my two other children who need me too."

But despite the family's struggles, Debbie tries to focus on the positives, and said: "Even though we are going through this there's always people worse off than me and children worse than him. We have come a long way. He sleeps and breathes a bit better."

She added: "As a family we know what's to come and even though we can't change that we try and stay positive and enjoy and love Frankie, focusing on trying to give him the best life he deserves."

Debbie said she was touched by Nikki's fundraising challenge, adding: "I didn't know her that well, I knew her through a friend. She met Frankie and said 'I have just got to do something for him'. It's amazing that anyone would want to do something like that!"

Nikki will run her first two marathons at an organised event in Poole before tackling the final five in Basingstoke, finishing at Barton's Mill, in Old Basing, on August 28.

She said: "I have a huge support crew of runners who have offered to crew for me, take turns pacing me and generally looking after my welfare - I couldn't be more grateful to all these people especially my key supporters."

Nikki has already raised more than £1,600 and has also received backing from local businesses, including Barton's Mill which has offered to host her final marathon.

To sponsor Nikki visit justgiving.com/Nikki-S/ and for more information about Frankie you can follow his story on Facebook https://www.facebook.com/pages/Frankies-Story/226877970846246.