This is a video we made of Gage's battle with Wolman's disease. It will be featured on the Synageva website, as well as the new LAL deficiency website.
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1 day ago
To read Gage's story, click on my picture
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About Me
- Mary
- Gage is my sweet son who was diagnosed with a rare and fatal genetic disorder called Wolman's Disease. He was the fourth known person to have a successful bone marrow transplant to cure this disease. Less than a week before being able to finally move back home, Gage developed an infection in his central line. After ten days in the PICU, we had to rock our baby to sleep for the last time. We miss him every day.
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1 comments:
Such a beautiful video. I loved all the pictures of Gage. Love all the smiles he had in the pictures. I bet I didn't get 10 seconds into the video before all the tears started. My heart breaks for you.
Thank you for continuing to update your blog. I look forward to your new posts.
Congratulations on the new baby!
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