Fundraising efforts from family, friends and colleagues have enabled 6 year old Zane Smith to visit Dr Issam Awad, a world leading expert in CCM3 in Chicago.

Zane is the grandson of Jan Smith, Children’s Services Receptionist at the Oaktree Centre, Huntingdon.  Zane has a rare brain condition called Cerebral Cavernous Malformation (CCM3) which causes tiny lesions and bleeding on the brain.

The money raised was put towards his trip to Chicago and to CAUK (Cavernoma Alliance UK).

Lee Smith, Zane’s dad said: “The main question coming this year was whether Zane needed surgery. Zane had a lesion that had grown and been bleeding in the last two scans and it was said last year if it doesn't stop growing and bleeding, on the 3rd scan it would - in Dr Awad's words – “need to be dealt with, before it dealt with Zane."

“But the great news was that it had shrunk and stopped bleeding, something which very rarely happens with CCM3. There is a lesion which has grown but Dr Awad has said Zane is doing amazingly well and as long as nothing gets worse or goes wrong, we will not need to go back for two years.

“Zane will be scanned for Scoliosis of the spine in the UK as 50% of people with CCM3 get or have this. Also 50% of people diagnosed with the condition also get a benign brain tumour and he hasn’t got one of these either, so it was pretty much all good news.

“We would like to say a huge thank you to everyone involved, and for all the fundraising which took place, especially to Sally Mead, based at the Acorn Pharmacy, the Oaktree Centre, Huntingdon for taking the huge step to cut her long locks back in May.”

More recently a team of 19 friends took part in a skydive at Sibson Airfield and to date the money raised is around £3,500!

(Photo: Kim (mum), Lee (Dad), Zane and Dr Award.