Clarisse is continuing to do well. She has completely recovered: No signs of Chorea over the last 18 months.
We are so happy to hear she is doing so well. This page has given us hope but I wish in some way the parents and i could speak…my son who has truncus arteriosus and 22q 11.2 deletion syndrome had his second open heart surgery 3/16/12. He is 5 years old. Approximately 4 weeks after surgery he started with wierd symptoms and at 6 weeks post operation he was full blown chorea. This is the first family that I have found that can give me and my. husband advice to get through this. This is by far the hardest thing we have seen Jordan go through to date. We are 5 weeks into diagnosis and frankly doctors are driving us crazy with responses that are vague. Please if the parents of this little girl see this post can we please contact via email. Thank you so much
We are confused and stressed and seeing Jordan go through this is heart breaking. Im just so relieved to have found Clarisse story considering she has a chd and 22q. Its the same scenario. Please help us! Thanks sarah and kenny!
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