Rorie was here to teach us.

Miss Rorie Akayla was born Nov 18, 2010 and she earned her wings on Nov 23, 2011. She was born missing part of her 22 chromosome other wise known as 22Q Deletion syndrome. Rorie faught hard to make it the 1 year, 1 week, & 1 day that she was here with us and we (her family) want to use her life to raise awareness for 22Q in order to help other kids. On the day of Rories service we released one balloon for everyday she was on earth and we tied a tag to them with her name on them. KATU offered to let us make this article so people can let us know if they find one of Rorie's balloons. This is just the start of something big - there has to be hope for the future for these other kids with 22Q.

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coralis says ... on Tuesday, Dec 6 at 9:54 PM

So sorry for ur loss :(

Cheryl says ... on Tuesday, Dec 6 at 6:19 PM

What a great idea. So sorry to hear, the pain is awful but the lasting legacy is beautiful. Bryant lived for 20 years and 1 month and 20 days longer than they said he would. While here, he made an enormous difference with his advocacy work.

Sharyn says ... on Tuesday, Dec 6 at 3:45 PM

My son Ruari has 22q and was 5 in October. We didnt believe he would make it to that first Christmas. We know that every day with him is a bonus and we are very lucky to have him in our lives, our thoughts are with you x

Becky says ... on Tuesday, Dec 6 at 2:48 PM

My heart breaks for you. I wish I had the magic words to take your pain away; unfortunately I don't. Please know that you are not on this path alone. My son, Seth, passed away May 22, 2011. He also had DiGeorge syndrome (22q deletion). Hugs, Becky

Stacy Karp says ... on Tuesday, Dec 6 at 1:24 PM

God bless you and your family. What an inspiration you are to me to always inform and advocate to others about 22q. Our son is 4 now, and he is a beautiful gift just like Rorie. Thank you so much for sharing this. I am passing it on!!

Kay says ... on Tuesday, Dec 6 at 10:32 AM

Rorie's memorial service was amazing. Many people came to show love and support to her family. The balloons at the end were a special tribute to a precious little girl. It was a day that we will never forget.

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