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Letter from the Editor
Summer Ends and the School Year Begins Summer is over and the kids are going back to school. Nathan (our Angel and youngest boy) is ready to enter kindergarten. We had our first IEP (Individual Education Plan) meeting with the school district and a separate meeting with the school. It has been very interesting to say the least… Now, we have experienced the heart-racing frustration that so many parents speak of. So, I have included some helpful links that have been given to me as I prepared for the meetings. We are parents and the best advocates for our children and young adults. I wish you all the very best…
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Marital Stress, Part 1
Marital Stress in an Angelman Syndrome Family By Marc Bissonnette 86%, 90%, double the national average, “significantly higher” – All those are applied often to the divorce rate amongst families of the multiply disabled. There is some debate amongst researchers about the true rate of divorce, but they often focus on a specific disability or on a generic syndrome, such as Autism (I say “generic”, because some aspects of Angelman Syndrome falls within the Autism spectrum) – Whichever you believe, there is no denying that stress levels and anxiety in a family caring for one (or more!) children with Angelman Syndrome (AS) are high. We know, anecdotally, that the divorce…
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Angels in Action – Carter’s Story
Carter learns to regulate his behavioral response by eliminating allergens and receiving RDI therapy: By Nealie Prewitt of Missouri Once Carter was diagnosed with Angelman syndrome; It didn’t take long for us to learn what life with an “Angel” meant. Sleep deprivation, behaviors, therapies, colds that always got worse, and social obstacles were some of the biggest challenges for us and Carter. There wasn’t a day that went by that I did not think, “there has to be something, some therapy, some approach, anything that I could do to make his life- our lives not so enduring. Sleep seemed to be the worst. I noticed that Carter always seemed congested…
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Gluten Free Living
Gluten Free Living By Isabel Orellana Over the years, gluten has become a much debated substance. But what is the fuss all about? It is estimated that 5-10 percent of the US population is sensitive to gluten. This would mean that 5-10% of our angels are sensitive. However, the number is probably much higher. When our angel first got diagnosed at 11 months we had never given him gluten because our pediatrician had advised us not to start with wheat before age 1. After the diagnosis and investigating about neurological differences and food related issues, it became clear to us that our angel would continue his gluten free journey for…
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Reflexology – Relax and Sleep
Reflexology By Mariano Schiffini At Casa Angelman Foundation, we implement daily or weekly therapy in our Educational Therapy Center where Angels can enjoy the benefits of this millennia old technique. Hyperactivity, ADD and the sleep disturbances that are so common in children with Angelman are being treated with reflexology yielding excellent results! Reflexology is a natural technique that is based on the principle that the entire body including organs and glands are reflected on specific points on the feet. Reflexology works by activating those centers through massage and by applying pressure to specific points thus creating harmony in the centers that are out of balance and activating the self…
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Angels in Action – Shea’s Story
Shea teaches himself to read! By Carol Pulver of Florida Angel Mom to Shea 22 years old, AS Del + Shea (pronounced Shay), our youngest, weighed a whopping 6 ½ lbs at birth. The largest of our 4 sons; his delivery followed an unremarkable pregnancy and he was born close to my due date. Shea’s Apgar scores (the tests done shortly after birth) were all normal/high. He had all his fingers and toes and everything was wonderful. Problems began in the next couple of days when Shea had difficulty nursing. He continued to have problems feeding and was back in the hospital at 6 weeks with “failure to thrive” (the…
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International Angelman Day 2013
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Social Security Disability Benefits and Angelman Syndrome
Social Security Disability Benefits and Angelman Syndrome Angelman Syndrome (AS) is a complex genetic disorder characterized by developmental delays and neurological problems. Children with AS often require around-the-clock care for their entire lives. Parents of children who have AS often dedicate extra time, energy, and even money to provide a high quality of life for their child. Assistive technology, supportive care, and specialty medical treatments rack up expenses quickly. Parents may even find it necessary to take time away from work to be with their child. The resulting loss of income and lack of medical insurances can be financially devastating. If your child has been diagnosed with Angelman Syndrome, he…
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Angels in Action – Krista’s story
Angels in Action is where you will read about the inspiring stories of the success in gained skills and abilities by our loved ones with Angelman Syndrome. Written by the families, we join in celebrating the abilities no matter how big or small. We believe it is important to inspire everyone with these real stories of our endearingly termed ‘Angels in Action’. Possibilities abound when we have a vision! By Karen VanPuyenbroeck of Illinois Angel Mom to Krista 10 years old, AS UPD When I was asked by our Editor In Chief, Lizzie Sordia, to write a piece about Krista’s abilities for this section; I asked myself, what were my…
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LGIT Testimonial – Anna’s story
LGIT Testimonial – Anna had a terrible start. She could not drink and because of this she was hospitalized 3 weeks after her birth. They soon discovered she had epilepsy and here in The Netherlands I understood, almost all babies with epilepsy get Phenobarbital. Because I was not satisfied with the care Anna received we decided to move to another hospital. So almost 6 months later, the new neurologist advised us to stop with Phenobarbital and start with Keppra. And it was a good choice. When Anna was 1 year old she finally got diagnosed: Angelman Syndrome. With Keppra, we succeeded to keep her seizure free for almost 2 years.…
