Little Miss Hannah Foundation
The Little Miss Hannah Foundation, a Vegas-based non-profit, helps children with rare and medically complex diseases receive the necessary support and equipment. This foundation, created in 2011, works to enhance the quality of life for these children. While it isn’t always possible to guarantee a cure or a long life, they strive to provide the children the best life possible and the parents the support they need.
Little Miss Hannah
Robert Ostrea, the founder of the Little Miss Hannah Foundation, started it in honor of his daughter, Hannah, who was born with the rare disease Gaucher type 2.
For this specific kind of Gaucher, no cure and no treatments exist. Hannah lived a life well-loved by her parents and two older siblings until she passed away on December 4, 2011, at age three.
Since no prospects existed to elongate Hannah’s life, the Ostreas focused on making her life as comfortable as possible. Through this difficult process, they realized few provisions exist for those with rare diseases to get the emotional and financial support they need.
“After she passed, we decided to create an organization, not only to provide a legacy for her but to provide an immediate impact to other southern Nevada families who were caring for kids with medically fragile conditions, rare diseases, or might be in hospice related care,” Ostrea said.
Their Purpose
Ostrea felt determined to keep Hannah’s memory alive and help other families in need. He founded the Little Miss Hannah Foundation in her honor and works hard daily to help raise awareness of these children and their illnesses, and get them the support they need.
Through the care process for Hannah, Ostrea realized many of the things Hannah needed were deemed “medically unnecessary” by insurance companies. Since these diseases are so rare, they tend to forget about these families and children in need. Lots of foundations help those with cancer research, autism, heart disease, and more. No one really pays attention to a disease that less than 1,000 people have in the entire U.S.
Unless they or a family member suffers from one of these rare diseases, they probably don’t know they exist. More than 7,000 rare diseases exist today. Despite the many rare diseases, because so few people have them, insurance policies do not include the medicine, equipment, or support for them. Patients and families have to figure it out alone. The Little Miss Hannah Foundation steps in here.
The Little Miss Hannah Foundation’s mission is to help enhance the quality of life for young children diagnosed with rare, life-limiting, or undiagnosed complex medical needs, as well as children who have been placed in hospice or palliative care.
LMHF Resources
The foundation hosts different emotional support groups for both parents and siblings. These groups allow families to get complex emotions off their chests and know they have a community around them. While the disease may be rare, the struggle with love and support for their child and dealing with insurance companies is shared with all families.
“When you have a child that has medically fragile conditions or has a lot of issues, you can feel alone. So what we try to provide here is a sense of community where you’re not alone,” Ostrea said. “Your rare disease might be specific to your child or your family, but the organization is here to help regardless.”
LMHF also hosts quarterly giveaways for the medical equipment insurance companies deny people. The equipment includes things like shower beds, car seats, and trays. This equipment helps the comfort of the child and helps to improve their quality of life and safety. I witnessed firsthand a child crying in a standard bassinet become silent and comforted once placed into their special-needs car seat.
“Those are the things that we like to provide for our families, and that’s one less thing that they have to worry about,” Ostrea said.
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Get in Motion with the Little Miss Hannah Foundation
Learn more about the Little Miss Hannah Foundation, Hannah, and her father’s work at the foundation’s website.
Follow LMHF on Instagram or Facebook, and help spread awareness about their message to help their work progress. And make a donation here!
LMHF also hosts two main events every year: a 5k run at the beginning of the year and a Tee Up Fore Rare every November.
This year’s Tee Up Fore Rare golfing event on November 23 raised almost $19K! Jenny Krshul, the executive director for Little Miss Hannah, explained the event a little further.
“Each hole features one of our ‘VIP’ kids and a rare disease fact. The goal is always to have fun, raise money, and leave the event more educated than when you arrived,” Krshul said. “After golfers finish their 18 holes, we [hosted] a luncheon and raffle. [With] over 30 raffle prizes, … we [had] some fun prizes to give away to our amazing supporters!”
Your next opportunity to #GetinMotion with the Little Miss Hannah Foundation will be their 5k on April 6, 2025.
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