Sunday, May 18, 2014

Ask me about 22q


Today was world wide awareness day for 22q Deletion Syndrome.  We are so super thankful for the team of doctors and nurses at CHOA who help care for Linnea.  Atlanta is actually one of the few cities that actually has a clinic for 22q patients.  We feel extremely blessed to have such a wealth of medical resources at our fingertips.  In honor of this day of awareness the 22q clinic held a 22q day at the zoo today to bring families all across the state so they could come together and meet one another.   It was such a great opportunity for us to meet other children who struggle in some of the same areas that my child does - and to see what our future with 22q might look like.  If there is anything I have learned in my medical adventures with both my girls - it's having someone who lives in your shoes is really priceless.  God is so kind to give us people along the way to share in our sufferings.  Pictured next to Linnea is a sweet girl name Willa Jane - she's from China too :-)!!  She actually came home a month before Linnea.   I had followed her families journey to bring her home.  They were a local family connected with Lifeline.  Willa's mom and I became friends but little did we know that we would share something so unique in our girls.  We had talked several times after both girls came home discussing how similar some of their medical journeys sounded and here we are today and they both are precious 22q girlies.  I learned a lot today and there is still much to learn.  Thankful I live in an area where this is possible. 

1 comment:

Shay Ankerich said...

What a blessing! LOVE that y'all had that opportunity at the ZOO! Fun! Thankful for you!!! XOXO