Thank you all you HPers for your loving thoughts so far.
There was a feature the other night in our local paper about Ben and his condition. His family have found out that there may be some hope in a gene therapy procedure that has been carried out on patients with a similar prognosis, in China, with some success. They are hoping to be able to get the same treatment over here or the alternative is to travel to Beijing. Either way, it is a costly procedure and they have now started a fund raising campaign.
Thanks once again,
Calmer XX
Good luck to Ben and his family on their quest, maybe they can think about a feature on their local TV news station?
I replied to your PM
Continuing to send love and healing to Ben and family and wish them well with their campaign.
Love Jo xxx