AS Family article
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The Benefits of Water – Not Just Hydration
By Darren Humphries New Zealand Father to Elijah – Del + (2004 – 2007) Of all the places in the world that Elijah was the most comfortable – it was in water that he thrived. The only time we ever lost Elijah inside the house was water-related. He managed to get into the bathroom, close the door behind himself, get into the shower and close the door behind himself and sit splashing in the remnants of water. In the end it was his giggling as he splashed that gave him away. Even though fascination with water is one of those characteristics of those whose lives are impacted with Angelman Syndrome,…
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Introducing The Kourkouta Family And The Angelman Greece Organization
By Clairy Kourkouta “Whenever I thought of myself as a mother, it never crossed my mind that I could have a child with special needs.” I always admired the families of special needs children so much and in fact I was saying that for people with special needs it’s really difficult to live in Greece, since common things such as government allowances, extra benefits, schools etc are things that someone has to look for by him/herself. A year ago and after a series of specialized tests, we found out that our sweet little girl, Olia has Angelman Syndrome, del +. By the time we got the results, we were sure…
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Angel Art
By Darren Humphries Some people like to collect stamps, coins and my late mother used to collect mugs. I used to collect stamps when I was younger, and some of those who know me would say I like to collect a few things, but my most prized collection is my Angel Ink Collection. Growing up I didn’t know many people with tattoos, so to have a tattoo would be something foreign to me. On 7 February 2011 we would be celebrating my son Elijah’s 10th birthday. In our family the 10th birthday was an important one. I recall that my two sisters and I were given a wristwatch, which has…
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Aromatherapy and Angels March-April 2015
By Shari Caspert, Mom of 18- year old Matthew There has been a lot of news about Essential oils and how they may help you with many health issues. This is very exciting, yet confusing at the same time. We have been using Essential Oils for the past 4 years in our home. We are always looking for options to help our son Matthew (age 18 with AS) to help him with sleep, behavior, anxiety, stress, focus, digestion and to keep his muscles strong and pain free. After much trial and research we have come to realize that his body is constantly changing and that we may need different strategies to…
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Family day at the zoo – Angelman Syndrome Belgium
Family Day at the Zoo in Antwerp By Inge, (Mum to Merle) We were hesitating to go or not to go to the Zoo, an activity organized in September this past year by the Angelman Syndrome of Belgium. From Poperinge, our hometown, it is a travel of about 2h 40 min by train which is quite a long time for Merle, our Angelman child. She can be quite unpredictable. Anyway, we decided to go for the adventure. ☺ Finally, we arrived somewhat later than the other families. In the morning we explored the park and during our walk through the park we met several other families with an Angelman child.…
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Angelman Research – Baylor College of Medicine Research Discovers Potential Therapeutic for Angelman Syndrome
Baylor College of Medicine Research Discovers Potential Therapeutic for Angelman Syndrome ASF-funded research, published in Nature, proves paternal Ube3a can be activated and AS symptoms can be recovered. Dr. Art Beaudet Promising Angelman syndrome research continues to move closer toward potential clinical trials, as announced in December in a paper in Nature by Dr. Art Beaudet and his research team at Baylor College of Medicine (BCM). More research will be conducted but pre-clinical trials in AS mice have proven that the paternal copy of Ube3a can be activated and that AS symptoms can be recovered, though more testing is needed to determine exactly how the cognitive deficits associated with AS…
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Siblings Love and Support 2015
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What the gala experience means for us
By Karen Hill So my countdown to the 2014 gala is officially underway. Tickets? Check. Hotel? Check. Dress? Well, that usually happens a week before when I have determined I have no more time to lose weight before shopping. I am fortunate that this year will be my third year attending the gala, and it is just under three years since my son Logan (5 del+) was diagnosed. Last year I was lucky enough to win a spot in the much-anticipated Colin Farrell meet and greet. As I stood in line anxiously for Paula to introduce us, waiting and watching the other families, I whispered to my husband, “that’s so…
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Angelman Anecdotes – Community Project by Alice Evans
Angelman Anecdotes “The breaking of that awful feeling of isolation is the greatest gift one Angelman family can give to another…. Those of you who will share your experiences will do it because in the Angelman family that is what we do. Whatever problems you have to meet, others not only understand but have found a solution. Whatever road you have traveled, others have traveled before you, so there is no need to travel alone.” Audrey Angelman Audrey and Harry Angelman, Orlando 1993 Whitney and Ashleigh (Sorenson) Evans Family Members: Let’s honor Audrey’s words by making a family section titled, Angelman Anecdotes (of an updated version of Angelman Syndrome from…
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Aromatherapy and Angels September – October 2014
By Shari Caspert, Mom of 17 year old Matthew Aromatherapy: Back to School Essentials For your Special Needs Child, Teacher, Therapists, Aides & You It’s September and it’s time to get organized. Time for our family to get ready to go back to school. IEP’s, backpacks, shoes, clothing, supplies and Essential Oils! As parents of special needs children, we often separate our kids and families as “Special Needs” , however the start of school brings the same issues for everyone in our household. Our emotions, excitement & anxiety are heightened whether we are attending pre-school, elementary school, middle school, high school or college. We are all typical and have the same issues as…
