Ever hear of Angelman Sydrome?

[Stitchfans]

Just got a letter from a family that lives here in my community. It was in my DD's book bag. It said that their daughter has Angelman Sydrome. It said that it is a rare genetic abnormality for which there is no cure. Also said that this 4 year old whose name is Grace will need 24-hour care for the rest of her life and she may never speak.

Grace is attending the Special Education Preschool Program at Indian Trail School where DD attends school.

Every year the Angelman Sydrome hosts a National Walk-A-Thon in twelve cities to raise funds for research. This family will be participating in the 3-mile walk on Saturday May 20th.

I have two questions.
1. does anyone else know anything else about this illness?
2. would you like to join me in supporting this family to try to raise money for research?

if so you can support them at www.firstgiving.com/gracepecho

said you can donate on-line at this website through Jully 20th.

 

[Scutapipig]

http://www.angelman.org/angel/index.php?id=75

My son (special needs) attended an early intervention program with a beautiful little girl with wonderful little red curls in her hair. She always made me smile, but I do know it is a difficult diagnosis for a parent to hear.

 

[mkymouse1928]

I worked with someone whose son has Angelman's. He is the most beautiful child I have ever met. That being said, I can't imagine what it is like to be in their shoes. He will only have a vocabulary of about 4-5 words, but he won't necessairly know how to use them. It was tough watching their parental joy turn to fear as they received the diagnosis. Hardly a day goes by that I don't think of them.

 

[c&ldisneylovers]

I have worked for many years at a special needs summer camp that has had campers with Angelmans. They are the happiest most beautiful children. Many children with Angelmans do NOT sleep much at all. They have moderate to severe mental retardation, little or no speech and often have little response to pain. Many children have a difficult time with balance and need constant supervision because they are into EVERYTHING. They are fun amazing children to work with!!