"Both my sons, now in their 40s, were born with an ultra-rare genetic condition called San Filippo syndrome, which causes physical and learning disabilities. It is a degenerative condition, for which there is no treatment or cure.
Most people with this disease die in childhood or adolescence, but, amazingly, our sons did not and are now thought to be the oldest people in the world living with this syndrome.
I became involved with Journey in 2012 when our younger son started attending its services which were based then at a site called Minsteracres. At the time Journey was looking for Trustees and I thought it was the least I could do to offer my services, especially as I have such a long experience of living with disability and a long-term and successful career in education leadership.
Our son no longer uses Journey because, as his disease developed, his needs could no longer be met. However, I am happy to still do all I can to help develop the service for other disabled people who can benefit from its much-needed, high-quality provision."
Barbara Simpson (Chair)