Tuesday, June 9, 2015

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. 


5 comments:

Masshole Mommy said...

WOW! Look how big he is getting. I guess you haven't posted a picture in a while because he's totally growing up.

indah nuria Savitri said...

Always love to see Emerson's smile...more than happy to participate :)

Theresa Mahoney said...

You know I adore Emerson! I did go to the donate page. They don't take Paypal? If your sister has a paypal address, I'd be more than happy to help, and send her some funds direct. We are laying off the credit cards right now, or I'd do it on the donation site.

~ Noelle said...

Oh my goodness...
He is getting so big!!!!!
Love that face

(Terry) My Journey With Candida said...

Emerson looks so happy in that picture. It is priceless.

Disclaimer

The opinions on this blog are my personal take on products and topics relating to motherhood. This blog is a personal blog written and edited by me.

I am not compensated to provide opinions on a variety of topics. The views and opinions expressed on this blog are my own. If I claim to show knowledge of certain topic or product I will only endorse products or services that I feel, based on my expertise, are worthy of such endorsement.

If you have any questions about this blog, or want to get in contact with me please email me at: anapeladay@gmail.com