This is the first blog in a hopeful succession of many to come. I have finally decided that I would like to share my story of living with a sibling that has the disability, Angelman Syndrome.
Angelman Syndrome is a rare condition, first discovered by Dr. Harry Angelman in 1965, that results in the abnormalities of chromosome 15 and is inherited from the mother’s side. Some characteristics include a love of water, proneness to seizures, an ever happy and laughing personality, jerky body movements and a lack of speech. But there will be plenty of time in the future blogs to delve into this more.
Through this blog I will share my experiences and that of my four brothers and sister. This blog is intended to be informative and educational with an entertaining element. It is not intended to make you feel terrible, guilty or sorry for myself or my brother, but it is going to make you think and hopefully inspire you to stand up for the rights of people with disabilities in Australia and the world.
I welcome you, your feedback and your interest.
thanks
hi !
ReplyDeletei'll read your blog from France ;)
i have a little boy (4 y.) with angelman syndrom, and a second boy (2 years old), who has no disability. I often ask myself, what the future of my second son will be, in this extra-ordinary life, witch is not always easy, but rich of sense too !
i wish you the best for your blog !
Great blog, but it was actually 1965 that it was discovered by Dr. Harry Angelman. This is so awesome that you are starting a blog about being the sibling of an angel. We always hear from the parents, so it's nice to hear from the siblings. I know my children will be more caring and considerate for having grown up with our Reese. -Jason B.
ReplyDeleteI hope to hear from all of you in the future. I would like people to be very active with my blogs. thanks you for your support
ReplyDeleteWhen my growing granddaughter, who has AS, couldn't be fitted with large enough bibs, I took out my sewing machine to solve the problem. I showed the resulting smock to friends, who loved it, and my project, Sophie's Smocks, named after my granddaughter, was born so that many kids with AS could have a free smock.
ReplyDeleteI buy new and gently used turtlenecks and trim. Supporters donate their time to cut and sew, and their money for postage and materials to keep the project ongoing.
All the smocks are FREE for children or older with AS. I make child size 6 to adult XL.
To get a smock, all you have to do is ask by emailing smocks@cox.net. Give me your child's shirt size plus a name and mailing address including zip. I'll send one as soon as I can.
There's no catch and no obligation.
Lois
hey Lois, thats a fabulous idea. Ive often thought of creating a bib for Harley. I'll be sure to post up your details. thanks
ReplyDelete