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Angels in Action – Sebastian
Getting the diagnosis of Angelman Syndrome can be one of the most devastating moments for a family to go through. I still remember how confusing and terrifying it was for us. After receiving the diagnosis, we have lived through our biggest fears, our most excruciating pain, but what’s most important, we have also lived through our biggest moments of happiness. Sebastian was born 9 years ago. He was diagnosed with Angelman Syndrome (del+) shortly before turning 3. It took us three years to find out. On one hand, we were relieved to finally know, on the other, it was hard to hear that kids with AS had such a difficult prognosis.…
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Do You Know Angelman Syndrome?
Trained by the most elite military and civil services, yet nothing can prepare someone for having a child with special needs. Angelman syndrome is a neuro genetic condition, often misdiagnosed as Autism or Cerebral Palsy. Symptoms include developmental delay, seizures, no speech, limited mobility, a happy demeanor – frequent laughing, smiling and excitability. International Angelman Day Feb 15th For more information visit www.angelmantoday.com
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Boost the Immune System
By Sybille Kraft Bellamy The human digestive tract contains about 500 types of probiotic bacteria. These “good” or “friendly” bacteria help support the growth and repopulation of the healthy gut flora in the lower gastrointestinal tract. They protect against “bad” or pathogenic bacteria and help the gut immune system to develop. Healthy bacteria also produce essential vitamins, which have an important nutritional value. To keep our children’s gut flora healthy and populated with probiotic bacteria, it is essential to give them a diet rich in prebiotic food. Prebiotics are non-digestible food ingredients, which feed the probiotic bacteria that live in our digestive tract. It is key to vary food choices…
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Healthy Fats For The Brain
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International Angelman Day 2014
As we all prepare for a new start in 2014, ideas and plans are being generated by individual organizations around the world, to celebrate International Angelman Day—our community’s global day of awareness. This young initiative is the result of a ‘virtual ‘group of organizations; an informal ‘collective’ that demonstrates a spirit of global unity and collaborative support. Through 2012, national reps were gathered from around the world for this collective. 23 organizations voted for a suitable date and logo, and by the time the inaugural day arrived, 35 organizations were on board. The number involved continues to grow and networking now occurs frequently and fluidly between more organizations, support groups,…
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The Gift of Helplessness
A Touching Story by Karen De La Fuente There was a Meeting in Heaven. Several angels and other souls were present, along with the usual Council members. It was time to prepare some souls for their journeys on Earth. Several Council members spoke about various topics, in hopes that these unique souls would truly grasp the missions that they were about to undertake. “When you first emerge in your physical form, you will still feel very connected to This Side; which, ironically they call the Other Side.” (A low chuckle ran through the room.) “As time goes by – and it goes by very differently from the way it passes here –…
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ABA Therapy – Applied Behavior Analysis
By Mark Mautone, M.A. ABA When educating children with Angelman Syndrome (AS), many parents look for the best schools that have teachers with extensive experience working with children with special needs. The programs that the parents observe are classrooms that educate children with different disabilities. These classrooms are categorized as Multiply Disabled (MD). These classes are always perceived to be the “generic” solution for children who possess deficits that are difficult to address in other classes. In saying that, these classrooms can be very effective for most children. However, one type of educational setting that is overlooked, is a classroom that implements the principles of applied behavior analysis (ABA). ABA…
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Siblings Love and Support – Valentine’s Day 2014
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Angelman Syndrome and Sleep Disorders
Angelman syndrome children and adults have serious sleeping disorders. by Sybille Kraft Bellamy Apart from seizure problems, it is one of the most difficult aspects of the syndrome to live with. Some angels sleep only a couple of hours a night, some fall asleep easily but wake up very early and some fall asleep very late and sleep late in the morning. This can disturb the school schedule or therapy sessions and it is exhausting physically and psychologically for the parents and caretakers. The majority of angels, do not take naps and when they fall asleep it is usually late in the afternoon which disturbs the usual sleep pattern. In order to increase the chance for our angels…
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90% Improvement in Seizure Reduction
My interview with Dr. Ron Thibert from my blog in December 2012. I recently had the opportunity to catch up with the Angelman community’s very own trusted neurologist Dr. Ron Thibert! He is the Co-Director of the Angelman Syndrome Clinic at MassGeneral Hospital for Children in Boston. His specialties include Neurology and Epilepsy Service. Many families in our community travel from many other states just to see him. He really understands how to provide the best treatment for our kids! Angelman Syndrome is so rare and when it comes to their brain and seizures, our kids need the best! They need someone who has experience to draw from when deciding the…
