Joining Jack Blog
The data Jack's trial has generated has shown that the drug Jack is taking is slowing down the progression of the disease. It’s pushing back the feared milestones of losses we know lie ahead. It’s not a cure but it’s a step in the right direction and everything we have all been working for.
As a parent of a child with Duchenne you constantly wrestle with the decisions you make. One of the toughest decisions we have had to make was whether to put Jack on a clinical trial. You might wonder why that was a tough one if that’s what I spend my time advocating and fundraising for.
When I first started writing this blog, I felt like it was a bit of a selfish blog to write considering everything, but I feel like it needs to be written because, as parents, if we don’t protect ourselves, we can’t protect our children. Duchenne parents have been really worried about COVID-19 for a while.
As a family we need and love our holidays because of the underlying heartbreak we live with every day as we watch our son’s muscles waste away. Eventually it will be impossible for us to take Jack on holiday and make the precious memories we cherish with him. Incompetence and error by Jet 2 holidays has ruined our holiday.
Can the government show its commitment to patients with rare diseases by making an exceptional decision for the 80 boys for whom this treatment may otherwise not be available until too late? While guaranteeing that this situation will not arise again and that other rare disease indications will be speedily addressed in a streamlined and fair process in the future. There are four things we urgently need to draw your attention to and need your help with!