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Special Tips for Traveling Families
By Eileen Braun, Executive Director of the Angelman Syndrome Foundation and mother to a young lady with Angelman syndrome. (taken from the previous article in Tips for Managing Holiday Stress, this needed to be its own article because it applies to more than just the holidays) Medications and Medical Records Gather your child’s medications and a copy of his or her medical records. Make sure you have enough refills for the length of the trip and a few days extra in case of inclement weather. TSA Cares blog – What to expect with flying with meds. You can also download the TSA Notification card. Medical Equipment If you are traveling with medical…
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Letter from the Editor May-June 2014 edition
May is here and many of us in the US are gearing up for the annual walk for the Angelman Syndrome Foundation. This will be my fourth year hosting the walk in Orlando, Florida. After my son Nathan was diagnosed, our geneticist handed us some information about AS by the Angelman Syndrome Foundation. I quickly went to the website to learn as much as I could. When I learned of the annual walk that I could host in my area, I had to get involved. I wanted to meet other families and see other Angels. I did not know how I was going to pull it off, but I was…
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Juicing
Juicing! By Sybille Kraft Bellamy A perfect way to provide a great amount of vitamins and minerals suitable for individuals following LGIT. Juicing has no limit! Let your imagination do the work! There is so many options to make juices with the LGIT-authorized list of fruits and vegetables. One of Max’s favorite juices is a mix of carrot, celery, apple, cucumber, ginger, turmeric, and one teaspoon of olive oil. I keep the vegetables as the top quantity on the list of ingredients followed by one or two pieces of fruit and the olive oil helps to homogenize the juice. You can drink the juice, freeze it as a Popsicle, keep…
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Bye-Bye Winter Hello Summer!
Bye-Bye Winter Hello Summer! By Sybille Kraft Bellamy We are done with snowstorms, freezing rain and below zero temperatures. Now it is time to enjoy the warmer weather. Unfortunately our children with AS are not well prepared for the hot temperatures. Max, 12 years old, deletion + is extremely sensitive to hot weather and humidity. To avoid any serious health issues we have to ANTICIPATE. Children and adults with Angelman syndrome have body temperature regulation problems. They cannot adapt to rapid temperature change or extreme temperatures. In Max’s case he turns pale, his heart rate gets elevated and he becomes very lethargic. A major priority is to control his hydration.…
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Angel’s Week Off Winners Share Their Vacation With Us
By Mary and Rory Moen How do I begin to tell everyone what this “Week Off” has meant to us. It was way more than a trip of a lifetime. First off, having “experts” like angel mom Lisa Jamieson and the Hamms’ PCA, William Twiner providing care for our angel Samantha turned out to be one the best experiences ever. Sam’s aunties learned so much from William and Lisa. What they left behind was knowledge, inspiration and motivation. To start with, Sam fell in love with William immediatley! Just to know that Sam was in good hands and being completely spoiled, allowed for us to really let go and relax. We had been in a pictello rut and stopped…
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La Historia del Síndrome de Angelman
El Dr. Harry Angelman fue un médico Inglés quien identificó lo que hoy en día se llama Síndrome de Angelman. Nació en Birkenhead, Inglaterra. Le fascinaba el idioma y la cultura de Italia. El fue el primero quien observó trés niños no relacionados quienes demostraban síntomas similares – atrasos severos intelectuales, un modo de andar que era espasmódico y rígido, ausencia del hablar, convulsiones, y una disposición contento. Luego, duranted unas vacaciones en Italia, descubrió una pintura llamada “Un Niño con una Marioneta,” creado por el artista del Renascimiento Giovanni Francesco Caroto, en el museo Castelvecchio en Verona. La pintura le hizo pensar en los niños que eran sus pacientes, y…
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Angel Family Experience with a Safety Sleeper
Angel Family Experience with the Safety Sleeper By Stephanie Moyer, Mom to Colin age 8 We have been using the Safety Sleeper for our son Colin for more than a year now. It has been a total game changer. Colin went from being up three to four hours every night, and he would kick the door and wake up the whole house. Since we received The Safety Sleeper, he sleeps 12 hours every night! We have seen the greatest difference when we travel. Before, we would go on vacation and Colin would average two hours a night — not much of a vacation! Now, we take his bed, and he…
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Our Family Sleep Tips
By Shari Caspert We learned the best tip at our very 1st Angelman Conference 15 years ago: Change Matthew’s bedroom door to a dutch door! It is the safest place in the house for him, he can play, have privacy and when he does not sleep we know he is safe! Thanks to his dutch door, he sleeps in a regular bed and has room to roam. Part of his nightly routine includes; diffusing therapeutic grade Young Living Essential Lavender in his room an hour prior to sleep and an Epsom salt bath with a few drops of Lavender. We love “pure” therapeutic grade lavender because it assists with sleep and…
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Angels in Action – Ishaar
Celebrating the Abilities of our Angels By Kiren Sandhu, Mom to Ishaar, age 5 Throughout the days (and nights), there is a lot of laughter. Ishaar does all of the laughing, and I smile and tell him how silly he is. I enjoy listening to his laughter as it means all is well in Ishaars world. Ishaar loves to pull my hair and smell it (its his way of being affectionate). He especially enjoys laughing as he is doing this. He is so strong that once he has a good grip, there is no escaping his clutch. So I am stuck until he decides ‘ok I’m done’. There have been times that I have been in a hurry to go somewhere, or in a…
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I am Angel Aitor
