SOFT

My sister's family goes to a convention every year for the nonprofit organization called SOFT.

If you are new to this blog meet my nephew Emerson. 

SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. 

Every year my sister's family meets new friends that offer support. She's also been able to meet with doctors that specialize in dealing with kids that have Trisomy 18, 13 and other related chromosomal disorders. Last year Emerson was able to meet with a doctor that knew so much in regards to his care. So much more than any doctor here in Nebraska. We are lucky that we have doctors that are supportive. Not every doctor around the country is positive. 

Emerson is always smiling. He strives to do things that no one thought he'd be able to do. 

In hospitals around the country babies that are born with Trisomy 18 and 13 are said to be, Incompatible With Life. More and more kids with an extra chromosome are living, smiling, and redefining Incompatible With Life. How can you call kids that are living Incompatible With Life?

To help you understand what Trisomy 18 and 13 are, that extra chromosome causes severe developmental delays. Down Syndrome - the most common know chromosome disorder is Trisomy 21.  

This year my sister's family is packing up to go to Utah. 

They need help to get there though. I donated $25. If you'd like to, or can donate click here. I understand if it's not possible to donate. Not everyone has the funds to do so. The smallest amount to donate is $25, but they have an OTHER button, where you can type in $5 + another $5 adds up.