It takes an average of five years for a person to be diagnosed with a rare genetic disorder.

For our son Parker, those five years felt like a lifetime. At 22 months, Parker was diagnosed with growth hormone deficiency — but that was only the first piece of a complex puzzle. As he grew, more clues emerged: developmental delays, feeding difficulties, and other subtle signs that something more was going on.

For years, we searched for answers. We met with specialists. We faced uncertainty, frustration, and tears. And through it all, we learned the power of persistence and advocacy.

Finally, after five years of questions, Parker was diagnosed with a rare genetic disorder (Wiedemann-Steiner Syndrome). But instead of bringing clear answers or a defined path forward, the diagnosis opened a new chapter of uncertainty. Because so little was known about his condition, we found ourselves in uncharted waters — without a map, without clear direction, and often without the guidance or support we hoped for.

That’s why Rare Genes Movement was born: to help other families navigating rare disorders feel less alone, and to work toward a future where no family faces these unknowns without support.

Parker’s story is not unique — it’s shared by millions of families affected by rare genetic disorders. Together, we can raise awareness, amplify voices, and help families find the support they deserve.