"It's all about me"

Dra’s Story
Born, August 1996. 5 weeks pre-mature, 4 lbs. 5 oz. 17 1/2 "
Early intervention October 1996, with C.S.D. domestic violence call, parents admitted illegal drug use. Placed in foster care. Labeled failure to thrive.
Grandmother came forward, permitted to be a foster parent October 20, 1996. Legal guardian June 1998.
Healthy but tremulous. Drug affected. Early intervention needs started March 1997 with Physical Therapy. Seizures came at about 6 months old, eyes started crossing.
24 hour video eeg at 11 month old, massive myoclonic seizures.
Eye surgery at 11 1/2 months old.
Started wearing A.F.O's (foot and leg stabilization braces) at about 18 months old.
Clinical Angelman Syndrome diagnosis's at just over 2 years old.
Seizure med's began at just over a year old, became seizure free, maintained med's for two years, then weaned off. Remained seizure free until July 2005, had a few while sleeping. Remains off med's
Has an I.E.P. is in life skills class. Works, still, with the same physical therapist, receives speech pathology, occupational therapy.
Uses wheelchair, quad canes and a walker for mobility. Can walk independently with standby assistance, unstable, falls easily.
Very friendly & loving, with a great personality. Very independent mind, uses full communication, many words (+/-, 50) sign language (+/-, 150) voice output device and pic syms. Eager to learn, loves to go and discover. Dra's language skills grow daily and I have a hard time keeping track of them. This is so great. Has exceeded and beyond, all expectations.

About Us

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I put this web blog up for my boy, he's my "Angel", my family and friends. To encourage parents, grandparents, legal guardians and care givers to advocate for their child, or the child they care for. To help enlighten the public about Angelman Syndrome. Possible links to finding and getting the necessary help. The challenges we go through, trying to get help for a child born with a genetic disability or any other disability. To enlighten school districts about Angelman Syndrome. These are very intelligent people who need extra help. Whether it be transportation needs, communication devices or on hands help. They are not to be hidden from society “shipped out of town” for their living or educational needs.

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