A Rare Disease and Hannah’s Fight

February 28th is Rare Disease Day: http://www.rarediseaseday.org/

For many parents having a child receive a diagnosis can be heartbreaking. But add the words ‘rare’ and ‘fatal’ to that diagnosis and heartbreak turns into terror.

Where do you find doctors to help in your child’s fight for life? Are there treatments? Are there others out there fighting the same battle? Will my insurance help in the fight to keep my child alive until a treatment can be found?

Our focus on 5 Minutes For Special Needs first Rare Disease day is Hannah. Hannah is a 7 month old baby girl diagnosed with Gaucher’s Disease type 2 or type 3, a very rare, fatal genetic metabolic disorder. Hannah’s most amazing Mama has dedicated much of her time informing others about Gaucher’s Disease while forming a community where other parents of children with this disease can support and learn from each other.

Watch Hannah’s video below. Then go and learn more about the fight to save Hannah’s life at Little Miss Hannah.com

Now go to Little Miss Hannah and meet this adorable little girl.

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