David Vetter, the original "Bubble Boy"
I found this footage and loved it because it is real pictures of this sweet boy showing what his life was like. (the music is a little weird, sorry)
Matt and I are standing by his AMAZING mother, Carol Ann, at a conference for the Immune Difficiency Foundation.
Carol Ann is STILL fighting to save kids with SCID! She said her goal is to see kids CURED.
It was such a sweet experience to go up to her and tell her it has happened! Because of her determination to get her son's story out there and fight for a the right procedures to be found. Our daughter is ALIVE and not living in a bubble.
I will forever be grateful for this amazing woman and her courage.
Here are some of our SCID "Cousins" as we call ourselves. :)
It has been such a great experience to meet other parents who have children with SCID. We get to see each other every few years and keep in touch through an email group Barb created (Thanks Barb!). On the rough days, it sure helps to know you have a group you can bounce questions off of and to know that you are not alone!
This year the conference was held in Texas. It was a quick trip but Matt and I enjoyed visiting the ALAMO and walking on the river walk during our free time.
Just recently, a law was passed for SCID to be part of newborn screening. This is a HUGE breakthrough. So many children will be saved through this simple test. Our job is to get Utah to put it into action. Matt and I will be talking on Friday to a group of about 100 doctors to tell them our story and help them see the importance of this screening... wish us luck!
7 comments:
I do wish you luck, but you won't need it. You will do absolutely fantastic. I'm so proud of you. I couldn't stop crying during that clip. That just makes my heart hurt. What a miracle Em is. we can't wait to see you in 11 days!!!
OH, that little boy....
That is awesome. I am sure you two will do a wonderful job! I am so grateful to be one of your friends! love you
Jill,
How can I get involved with you guys? I'd love to help.
- Deni
You and Matt are the choice ones to do this, you know the difference one person can make in getting this done, and you and Matt will help, how neat knowing you are helping other children, Em is a miracle we are forever thankful for, I can't imagine her in a bubble, she is so full of life, what a blessing!
It's great that you are making a difference! I hope those doctors listen!
That is so neat! And by the way I am LOVING your hair!
What an amazing experience and opportunity. You will make such a difference. I love that clip, I remember watching it live. All America loved the bubble boy. What an amazing experience to meet his mother. You make such a difference in the lives of others!
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