The Diagnostic Odyssey

Odysseus wandered for ten years. Ten long years.

For children with genetic disorders, the average time spent in the "Diagnostic Odyssey" is more than 8 years. For many children and their families, Odysseus' decade long walkabout looks easy in comparison.

For so long, you didn't know. Once you do know...well, sometimes the answer leads to even more questions. For starters, what does the diagnosis mean? What is the outlook? What are the treatments? How can we best support our child? Perhaps you just had a pediatrician or a specialist that was treating your child - suddenly you have a whole team running tests and looking at imaging. If you already had a team, you are now tasked with explaining a disorder to them that you barely understand yourself. That one question "why" was removed and a dozen questions grew in the space it left behind.

That's the thing about the diagnostic odyssey. Once the odyssey comes to a close, your journey begins anew. For some, that journey is on a well-lit path - perhaps not paved but at least well marked for you by those that have gone before. For children with extremely rare or newly discovered genetic disorders, that path is not yet carved into the landscape and must be cleared with each step.

Not all answers are complete answers. There is no treatment, aside from management of symptoms. There is no cure. There is minimal information available to parents, patients, and physicians. But there is hope. There is always hope.

If you are reading this because you or your child or someone in your life has received a CLTC-Related Disorder diagnosis please know that our goal is to help clear that path and make the walk less difficult for those who come after us. Though we may be a world away from one another, we will walk with you as long as you need us.

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