Long story short, we have come into contact with Danielle Smith, the author of www.extraordinarymommy.com and a new show on MomTV called "The Spin Cycle". This is a web-t.v. show that she hosts live on Wednesday nights, at 8PM CST. Danielle will be the host/MC for our Trivia Night on Saturday. She spent some time getting to know Ryan and I last week and tonight, she talked about our family on her radio show. If you have approx. 30 min. and would like to watch it, click here, then click on the MENU button you see on the video clip. Choose, VIEW MOVIES, then select the clip from 7/16/09. During the news cast, she also commented that she will be writing 2 other articles about Ryan and our family. When we know of those links, we will share them with you.
Danielle,
We would like to sincerely thank you for taking time to help us raise awareness about Spinal Muscular Atrophy and for accepting our invitation to host our Trivia Night on Saturday. You graciously took time out of your busy schedule to bring our family's story alive for others. Your interpretation of our story was accurate and heartfelt. We look forward to reading the entries you will be writing and enjoying Saturday evening with friends, family and supporters of our brave son, Ryan.
Chris & Jenn Hawn
5 comments:
Hi Hawn Fam. I happened to catch one of Danielle's tweets and found your site through ExtraordinaryMommy. Ryan is absolutely gorgeous. He's got the same deep, intelligent, bright eyes that one of my boy's does. It's almost as if they can look at you and you know they know more than you do. I'm not sure what else to say aside from you'll be in my prayers and the old, "If you ever need anything..." Which, if you do, I'd do anything I could. Thanks for putting your story out there! Important causes always need voices.
The very idea that you are thanking ME.....I am grateful to you for bringing the joy of your family into my life.
I am thrilled to be MCing on Saturday. I loved talking about you and Ryan tonight.
Here are the links to the two posts:
http://momitforward.com/mom-fights-for-her-son-fights-for-a-cure
http://www.extraordinarymommy.com/blog/uncategorized/do-it-for-ryan/
Hugs. Lots of them.
Danielle
Hello. I learned of your family watching Spin Cycle. I just want to stop by and leave you lots of strength, love, hugs and Prayers. Your family is so beautiful. I wish there were something I could do or say that would help.
I will offer the assistance of Spirit Jump. It's an organization that strives to "Brighten the Days" of children, women and men who have cancer and other debilitating diseases, by sending cards and gifts.
www.spiritjump.org
Bless your family and may God watch over you and guide you through this trial.
Hi Hawn Family, Amy McLean sent me the link to your site. My son gets services thru Wings right now too. He has a rare syndrome without a name that causes his brain to shrink and therefore is systemic, discovered at 6 mos old. Hayden is fed TPN & Lipids via a central line thru a broviac cath in his chest. Hayden is a quadruplet, they are 3 years old. I recognize your feelings about what Ryan should be doing for a typical baby, we're mostly past that now or maybe we've been too busy with three wild monkey children and one medically fragile. Anyway I admire that you are able to take on the cause for SMA and becoming such a strong advocate. Ryan is such a beautiful baby and those eyes show the fight that he has. It's amazing how differently life looks when you see your child struggle everyday. I should also let you know that if Ryan qualifies for respite care thru the regional center for developmental delay, we have found a really great nurse to provide respite. I'd be happy to share her info, she also works for nurses2go.
The Barnes Family
www.caringbridge.org/visit/haydenbarnes
I followed you over from Danielle's site. I wanted you to know that I am thinking about and praying for your family and Ryan. I wish I had 8 people to do the trivia night (I see there is an open table) but I just don't. I signed the petition and am following. Best wishes from St Charles.
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