There were five kiddos with CHARGE and their siblings and parents. We met at Cameron's house near Seattle.
It was wonderful! We have all supported each other so much via email and phone...but it is so much better in person! And we all absolutely loved getting to spend time with each other's children and admire their tremendous progress. Each of them has something very special and unique! And it is also so interesting how common some of their CHARGE "traits" or "quirks" are...the shape of the ear, the famous happy dance, or the floppiness when they sit. In many ways, they are family as they are genetically linked with CHARGE syndrome.
At one point, three kiddos were being fed via their Gtube...and it was completely normal to have the suctioning machine being used throughout the afternoon. And no one even blinks about any of it because this is the norm for all of us! :)
Max's first time wearing shoes! So fun! (Like his toy?)
I brought along Max's favorite toy so that he would feel comfortable. All the other kiddos loved it too! So cute to watch them all together!
Now Cameron joins in too!
Max and his friend, Evan.
How cute are they sitting beside each other playing???
Miss Maya and Evan checking each other out...
And this is beautiful Cassidy being silly for me! She's adorable!
The beginnings of the WA State CHARGE support group! Love you all!
6 comments:
Wow!!! What a beautiful picture! It is so inspiring to see all of you absolutely amazing parents and those remarkable little babies together in one place! If that isn't a testament to the power of faith, community and the resilience of the human spirit, I don't know what is. You are all in my prayers every day, both for you, the health of your children, and my hope that I, too, will have your strength and faith in the face of adversity.
What a great gathering for all of you!
Wonderful that everyone was healthy enough to be there together.
I love seeing all of the children growing and developing so beautifully!
Max, you have some great pals!
Love from Grammy Suzanne
Oh wow! I loved the pictures and am so excited to hear that you were able to make it.
What a great group and I especially loved seeing you all in the last photo. What wonderful children, families, and obviously great friends.
Max, I loved your new shoes. You'll have to wear them sometime for Dylan to show him they stay ON the feet. You are looking as handsome as ever!
Kristy, Dylan, Ray, and Jonah
I am so jealous! I wished we had some CHARGE families near us (or atleast one).
Anyhow, it looked like alot of fun and I love Mr. Maxwell's shoes. Too cute!
I am so glad Max was able to make it. You both needed it!
Have a great week and Max- tell your heart and your reflux to BEHAVE :-) Mommy and you need a break.
Love
Jennifer and Cedie
I have to say I am jealous too, I did get to meet some CHARGErs here but we only meet once and I hope we can meet up again but they are alittle older then Eva so its not easy.
I am so glad you had such a good time!! I hope we all get to meet at the CHARGE confernce next summer.
Crystal and Eva
I knew nothing about CHARGE until I saw Max and You on the news..and then started following your blog. what an AMAZING group of kids and parents. If you have ANY fundraisers, awareness sessions etc..you keep me in your email address book as someone to call on! I am SOOOOO impressed by all the parents involved..I want to help if ever I can!!
Hugs to you and Mighty Max!
Jaye
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