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Wednesday, January 18, 2012 |
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Well just had a moment and thought I would update. Brady is doing great! Knock on wood, he remains seizure free for now. He is back in school and got new braces for his legs recently. He is doing great with the braces but they will have to be adjusted. His gait is more steady and he seems more confident with his braces. We went back for an EEG in Dec and everything looked really good. Hopefully we can stay on this track and keep him healthy and seizure free for a very long time. He continues to make progress in many areas. We are still working on potty training and self feeding, but it will come in time.
Clinical trials will hopefully begin by the end of the month, but we wont know right away if Brady is going to get in, so please keep him in your prayers. We did learn that trials will start in Tampa Fl, which is great for us, as its within driving distance. For more info about trials visit www.cureangelman.org
We have many Angels who are having seizure difficulties at the moment, so please remember them in your prayers. While I love Brady just as he is, I pray that one day Angelman Syndrome will be a thing of the past and that our children will no longer have to suffer the difficulties that come along with this syndrome.
Anyway, its nearly 1am so I better hit the hay. Hope you all have a blessed day! |
posted by angelwings
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12:44 AM
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| About Brady |
Read Brady's Story Here
I am a happy, healthy 9yr old little boy. I have Angelman Syndrome which makes me even more special. I bring joy to all those who meet me. Just because I am unable to speak, does not mean that I dont have lots to say; I make that very clear to mommy and daddy everyday!
See my complete profile
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Big Happy Tent |
Big Happy Tent is a homegrown non-profit organization started by Marcel Cairo and his family. Our mission is to take Angelman kids and their families camping, surround them with nature, water, music and fun, and let them soak in the wonder and joys of life.
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Interactive Seizure Diary |
This
downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.
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Angelman Syndrome Foundation |
The
Angelman Syndrome Foundation is a national organization of families,
caregivers and professionals who care about those with Angelman
Syndrome. It is also a member organization of the International
Angelman Syndrome Organization (IASO).
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Angelman
Forum & Chat |
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The AS Forum was created in April
2005 and provides an easy way for family members and carers of
people with Angelman Syndrome (AS) to exchange information with each
other.
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Cure Angelman Syndrome |
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The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
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