MPS families carry a weight that others may never fully understand. From the moment of diagnosis, they’re asked to hold two truths simultaneously: to hope fiercely for their children while also confronting the reality that MPS can shorten their lives. It’s a burden that can feel impossible to bear, yet many families find themselves needing to think about end-of-life care earlier than any parent should.
The Courageous Parents Network understands this unique journey. Their resources acknowledge that loving children means sometimes having to consider outcomes families would rather not face. They offer guidance on how to approach these conversations with compassion, helping families navigate everything from initial discussions to practical planning.
Considering end-of-life care doesn’t mean giving up hope. It means loving children enough to ensure they’re comfortable, surrounded by what matters most to them. It’s one of the most profound acts of love parents can offer.
Remember, seeking support is a sign of strength, not weakness.