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Home | Little Miss Hannah’s Legacy

Little Miss Hannah’s Legacy

By Carrie Ostrea, Hannah’s Mom and Co-Founder

When our daughter Hannah was diagnosed with an ultra-rare genetic condition, we found ourselves navigating a challenging journey with little local support or resources. After Hannah passed away at age three, my husband Robert and I knew no family should have to face this path alone. What started as our way to honor our sweet, feisty daughter has grown into something bigger than we could have imagined – a grass-roots community of hope and support that has touched hundreds of lives across Southern Nevada. With no paid staff and running entirely on volunteer power and community donations, we’ve shown how a small group of dedicated people can make a real difference in the lives of local families.

Our foundation brought families together in ways that made everyone feel less alone. Sure, there were the fun events – Halloween parties where kids could just be kids, exciting nights cheering at Vegas Golden Knights games, adventures at SeaQuest, and baseball games with the Las Vegas 51s. But the real magic happened in between these events, as parents shared tips over coffee, kids made friends who truly understood them, and families realized they had a whole community behind them.

Hannah’s big brother and sister, Ethan and Abigail, have been part of this journey from the very beginning. Their experiences helping care for their sister as young children shaped how we support entire families, not just the children with medical needs. Ethan started helping build and prepare equipment for other kids when he was just 13, channeling his desire to help into practical support for families. Abigail, who was once Hannah’s “junior nurse,” grew up to become our Community Engagement Manager, and her unique perspective always helped us find better ways to support the siblings in our programs.

Since 2012, our community has accomplished amazing things in Hannah's name:

  • Connected over 500 Southern Nevada families supporting children with more than 160 rare diseases, plus medically complex and fragile children in hospice or palliative care
  • Made sure every family who needed equipment got it - we haven't had to turn down a valid request since 2016, even during COVID
  • Provided over 400 pieces of life-changing equipment that insurance typically doesn't cover, including:
  • 143 special chairs that help kids sit comfortably and safely
  • 31 bath and shower units making bath time easier
  • 33 special needs car seats helping families get out and about
  • 28 adaptive strollers and wagons for community adventures
  • 49 therapy tools supporting development and independence

  • 27 medical devices making daily care more manageable

  • Built lasting connections through English and Spanish Facebook groups, WhatsApp communities, and in-person support groups
  • Helped make sure Southern Nevada's rare disease community has a voice in healthcare discussions

None of this would have been possible without our dedicated board members over the years. Their guidance and heart helped turn our family’s hope into a foundation that changed how Southern Nevada supports families facing rare disease journeys.

While our foundation’s chapter may be ending, Hannah’s legacy lives on in every piece of equipment helping a child live more fully, in every friendship between families who once felt alone, and in every lesson we’ve learned about supporting each other through life’s toughest challenges. The connections and community spirit that grew in our daughter’s name will continue to make Southern Nevada a more supportive place for rare disease families for years to come.