James and Jenny

James and Jenny’s son Finn died suddenly when he was four months old of a rare neuromuscular disorder called SMARD1. It’s so rare that doctors don’t screen for it prenatally, so James and Jenny had no idea they were both carriers for a disorder that almost always kills affected children within 13 months.

The only safe way for James and Jenny to have a healthy, unaffected baby involves complicated medical procedures, genetic testing, and numerous medical appointments. The costs are expected to be immense, and neither of their health insurance plans offer any fertility coverage. And unfortunately, there are still no guarantees that this difficult process will yield a pregnancy.

Though they don’t know when they will be emotionally prepared for this process or if adoption may be a better route (which comes with its own considerable financial cost), they would like to try to have a second child someday. They loved -- and will always love -- their little Finn, and they have so much love still to give. Anything you can contribute to help offset the costs of upcoming appointments and procedures is appreciated.