Dozens of families affected by the same medical condition converged in Daventry on Saturday for an annual meeting.
Support4SDR is for families and people with, or affected by, selective dorsal rhizotomy, a treatment used for a symptom of cerebral palsy.
The event was organised by Daventry’s Jo Davies, whose daughter Holly, eight, had the surgery four years ago.
Mrs Davies said: “This is the fourth year we’ve held this event for people who have had the operation. Most of them have been forced to go to the USA to get it done as not many areas of the NHS fund it. We had 86 youngsters who had received the treatment there at the Daventry Court Hotel, and 340 people were there in total. When we started we had 96 people at the first one.
“It’s a chance for everyone to meet. We get people from all over the UK coming and we practically take over the hotel!
“It gives the youngsters the chance to meet with others who have the same condition – Holly doesn’t really know anyone locally who was in the same position as her. The siblings also get to meet others, as they can feel overlooked. Plus the parents and families get to chat as well.”
SDR kills off some of the nerves which cause muscles in the legs to tense. Without the treatment sufferers can find it hard or impossible to walk more than a few footsteps.
Holly had to travel to the US for the treatment at a cost of thousands of pounds. Before, she struggled to walk without falling but now she runs and walks like others her age.
Mrs Davies said: “With the changes to the NHS, they are looking at having a test group and following their progress for two or three years to see if the treatment is good value. It’s frustrating they won’t accept evidence from the US where it has been done for 20 years.
“It’s a step forward, but it’ll take years. Even then if NICE recommends it for the NHS, hospitals and GPs will need to find money to carry it out.”