Jul 22, 2013 · 7:00 PM
This location is shown only to members
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.
Tonight, we will be helping the Ostrea Family prepare feathers and goodie bags for The Second Annual Rainbows to the Sky event to be held on July 24. This year's "party" will be held at Town Square and will commemorate Hannah's 5th Birthday. All money raised from the event will be used to help other families cope with genetic diseases. We will be meeting at my home and light refreshments will be served. Please be advised that I do share my living space with a 100 pound friendly dog and two kitties.
AS ALWAYS, PLEASE RSVP WITH INTEGRITY.
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.