Okay Everyone- this May 16 we are involved in a Walk A Thon for the Angelman Syndrome Foundation!!! For those who don't know what that is let me share...
Angelman Syndrome is a neuro-developmental genetic disorder that affects every part of a child’s life. There are many symptoms, such as seizures and severe developmental delay. One of the best things about the disorder is that she is happy most of the time. One of the hardest things about the syndrome is the difficulty communicating. It is expected for our angel to only be able to communicate with 2-3 signs or gestures throughout her lifetime. We've heard more promising numbers recently, but communication is still a major hurdle. Angelman Syndrome also gives her severe ataxia and hypotonia which means she has about a 50% chance of walking independently.
Our little girl, Alessandra was diagnosed shortly after her first birthday. She was not able to crawl or sit up unassisted at the time. We have worked very hard with various therapists to encourage her in functional skills such as crawling, sitting, walking, and eating. She is now 3 and we have been overjoyed to receive her first walker, allowing her some freedom and practice with walking skills. We hope that she will be one of the angels who earn their feet, so to say, and be one of those that is able to walk independently someday.
Angelman Syndrome Foundation was established to raise money for research and awareness. They were our first and best source of information when we received Alessandra’s diagnosis. They help families, caregivers, and even the doctors to know more about this rare and relatively unknown disorder. We want to help them do the work they do, which in turn helps us and thousands of other families as well. The research that ASF (Angelman Syndrome Foundation) has funded includes; studies on the best educational avenues, therapy options, and alternative communication strategies for our angels. They are also funding genetic research with hopes to cure or greatly improve the difficulties of the syndrome. They have earned a 4 star rating from CharityNavigator, an honor that only .08% of non-profit organizations have received. This shows how very committed they are to fulfilling their goals of research and awareness.
Our little girl, Alessandra was diagnosed shortly after her first birthday. She was not able to crawl or sit up unassisted at the time. We have worked very hard with various therapists to encourage her in functional skills such as crawling, sitting, walking, and eating. She is now 3 and we have been overjoyed to receive her first walker, allowing her some freedom and practice with walking skills. We hope that she will be one of the angels who earn their feet, so to say, and be one of those that is able to walk independently someday.
Angelman Syndrome Foundation was established to raise money for research and awareness. They were our first and best source of information when we received Alessandra’s diagnosis. They help families, caregivers, and even the doctors to know more about this rare and relatively unknown disorder. We want to help them do the work they do, which in turn helps us and thousands of other families as well. The research that ASF (Angelman Syndrome Foundation) has funded includes; studies on the best educational avenues, therapy options, and alternative communication strategies for our angels. They are also funding genetic research with hopes to cure or greatly improve the difficulties of the syndrome. They have earned a 4 star rating from CharityNavigator, an honor that only .08% of non-profit organizations have received. This shows how very committed they are to fulfilling their goals of research and awareness.
Also- Alessandra is going to walk-in her walker the entire mile of the walk, So please if you can- register to be a walker at http://www.angelman.org/ , or sponsor her at http://www.angelman.org/ForAlessandra
Hi there! My friend Amy (a friend of yours) sent me your blog info because I also have an Angelman child, my oldest son Covey who is four. I love meeting new families with Angelman kiddos so we can network and be a support to each other. Your little angel is quite the cutie. :) Our family blog is momentstolivefor.blogspot.com and my name is Diane. Feel free to contact me and check out our blog too!
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