Imagine the horror and the pain you would feel if you learned that the precious. newborn that you had dreamed of for nine months was not the healthy child that you had hoped for. Instead, you are told that not only is your child ill, but that this perfect human being has a rare, life limiting disease. Sadly, that is what Las Vegas' own Ostrea family faced when their gorgeous Little Miss Hannah was born in 2008. For three years, Hannah's family researched the rare disease that their baby had while still working hard to make sure that her short life would not be short on life. After Hannah's death in 2011, the family vowed to continue to fight for other families who are facing the devastation of rare diseases.
Thus was born the Little Miss Hannah Foundation.
The Little Miss Hannah Foundations’s mission is to help enhance the quality of life for young children diagnosed with life-limiting rare diseases, undiagnosed complex medical needs, and children who have been placed in hospice or palliative care.
The foundation also gives parents the necessary tools to empower them to meet their child’s unique medical and lifestyle needs, as well as provide support resources and special attention for their other children.
LMFH will host workshops on medical record management, media awareness opportunities, using social media to reach out for support, and finding the right information about your child’s condition. We work to provide support groups for all members of the family by providing fun, family-focused and sibling-focused events and activities.
By working hands-on with families that are faced with losing their child due to a medical condition, the Little Miss Hannah Foundation will strive to empower, educate and support families during the most emotionally-charged times of their lives.
Tonight, we will be helping the organization prepare for Rare Disease Awareness event for three local schools. Our help will be needed to cut about 6,000 jean ribbons and prepare packets for almost 3000 students. It won't be hard work, but there will be lots of it. The Little Miss Hannah Foundation will provide pizza and water.
The company that is hosting the event has asked that the address only be given to those who RSVP in the affirmative, but the location is close to McCarran Airport.
Please, please RSVP with integrity because the organization is counting on every pair of hands. If you have any questions, feel free to e-mail me at email@example.com
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