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Help for Baby Ethan and Family

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This beautiful baby boy, Ethan was born on May, 16th 2019 to our friends Larissa and Paden and has since spent over half of his brand new life in the hospital. He has been diagnosed with a ridiculously rare Surfactant Protein C deficiency (SP-C).
This one in a million mutation arises spontaneously in the child in about 55% of the cases or is inherited from one of the parents in the remaining 45% of cases. This condition has a highly variable presentation, from acute respiratory distress to a more slow-onset and chronic lung disease. It can affect infants, children, and adults.


Currently, there is no specific treatment for any surfactant protein deficiencies. For affected newborns, surfactant replacement therapy may improve respiratory status transiently but is ineffective in treating the underlying deficiency. 


Lung transplantation may be considered. However, given the critically-ill and unstable state of these infants, the pre-transplant period is associated with a high risk of dying (up to 30%). The 5-year survival rate following lung transplantation has been reported to be about 50%.

Our hearts are breaking for this precious little guy. Although he's giving it his best fight, he and his family still need support and help. Living in the hospital is not pleasant for anyone, especially the parent of a newborn. This fund is to help this wonderful little family with any and all expenses they could need help with. What they need to do now is focus on getting Ethan stronger and finding a way to beat this rare disease. Please donate.
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Donations 

  • Carla & Nick Bobak
    • $200 
    • 4 yrs
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Fundraising team: Team Ethan (3)

Josh Eckenrod
Organizer
Raised $195 from 4 donations
Granbury, TX
Larissa Bobak-Stern
Beneficiary
Raised $200 from 1 donation
Elizabeth Gaylord
Team member
Raised $50 from 1 donation
This team raised $3,870 from 29 other donations.

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