For us, one of the big “stories” of our struggles with Sacha’s condition, and of all the therapies and incredible support he has had, is how Jackie Chase at Under the Bridge studios in Brighton has been there for Sacha and for all of us as a family. Jackie is one of those rare people who make communities, and hold them together, as wave after wave of new parents in Brighton have come to know. It was Jackie who gave us a direction and helped put some fight in us when we first got a diagnosis, and she has fundraised tirelessly for Sacha via Under the Bridge.

We came back from Sacha’s latest round of intensive therapy to a new fundraising idea of Jackie’s that literally brought tears to our eyes: a recording of Rick Kemp’s song “Somewhere Along the Road” by Brighton College students, organised by Jackie and with Henry Tomlinson (also one of the pillars of Under the Bridge) on piano. Jackie is selling the recording for £5 via Bandcamp: