In my experience, it can be tempting to jump at the chance of getting your child onto a drug trial, though there are definitely things to consider-
Are you happy with all the extra hospital visits on top of your child’s routine appointments? Will it impact on any siblings? Can you afford time off work, childcare for other children, treats for being brave etc?
Can you be strong when your child is upset or scared about blood tests or other procedures? Would you be prepared to stop any supplements you give your child, even if they ended up taking a placebo?
We decided we were happy enrolling our son onto a trial and are definitely glad we did.
Of course, a massive plus of taking part in a trial is the chance of accessing a new potential treatment before it’s available. Another advantage is the extra checks our son has, meaning more opportunities to pick up any potential problems.
For us as parents, we feel that we’re ‘doing our bit’ to help defeat Duchenne. If it doesn’t directly help our son, it could ultimately help future generations - for us that’s what makes taking part in a clinical trial worthwhile.