On the 26th April this year we were given the devastating news that Sebastian has Retinitis Pigmentosa (RP) / Ushers syndrome, this is a rare genetic condition (only around 9,750 case known in the UK) it means that as well as Sebastian already having hearing loss, his vision will deteriorate leaving him with only a small tunnel of vision at best. We had hoped this would be a slow deterioration, but over the last few months Sebastian has become nightblind and we believe his peripheral vision is already deteriorating. We desperately want to get Sebastian to see and experience as much as possible before this condition worsens. Our dream is to get him to meet all the princesses at Disneyland so he has the happy memories to keep forever.