Rick Santorum's Trisomy 18 Heartache Could Help Families Get Much-Needed Support

rick santorumAll politics aside, my heart goes out to Rick Santorum and his family. I can't imagine what it's like caring for a chronically ill child, particularly one with a condition as severe as Trisomy 18. Three-year-old Bella is reportedly making a "miraculous" recovery from her recent bout of pneumonia, but children suffering from the same genetic disorder don't typically experience significant periods of relief; tragically, most kids born with Trisomy 18 don't live past their first birthdays. Almost half die within the first three months of life.

But there are still kids living with Trisomy 18, which means there are families who need help facing a set of uniquely heartbreaking challenges.

And whether or not she'll ever know it, little Bella is doing those kids and families a huge service by bringing Trisomy 18 into the spotlight.

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There are so many potential issues, from coping with physical disabilities to the cost of medical care to the unfathomable reality of needing to make "end-of-life" decisions for your child -- and most families go through it all alone. So few children with Trisomy 18 survive past infancy, it's incredibly difficult for parents to find and connect with each other.

Santorum must have struggled with this sense of isolation himself, because he's been very open about his personal, oftentimes conflicted, journey as Bella's dad. He must know there are parents out there who desperately need to hear his story, to be reminded that they're not all alone.

Thanks to Bella, Trisomy 18 finally has a face, and a beautiful one at that. Hopefully one little girl's brave fight will inspire more research, support, and prayers for all the other kids and families affected by this life-threatening disorder. (For resources and more info, visit the Trisomy 18 Foundation's website.)

Do you know a family dealing with Trisomy 18?

 

Image via Gage Skidmore/Flickr

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