Angels in Action
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Angels in Action – Kamaray
Celebrating the Abilities of Our Angels By Andria Sivill, Mom to Kamaray This is KamaraySivill, age 7 from South Sioux City NE riding her new adaptive TRIAID bike she won through the Great Bike Giveaway. Kami is enjoying her summer & newfound freedom riding in the outdoors. Thank you, Bart, Andria & Kamaray Sivill In the previous March-April edition of Angelman Today, we helped to promote The Great Bike Giveaway through Friendshipcircle.org and we are proud to announce a winner from our very own Angelman community!!
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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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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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Angels in Action – Lukas
Celebrating the Abilities of our Angels By Angela Humble Tucker, Mom to Lukas age 15 It’s hard to believe that we have a 15 year old son. Our son does not do all the typical things that a 15 year old would be doing such as video games, hanging out with friends, talking on the phone (or I guess texting), or competing in High School sports. Instead we have a 15 year old boy who has Angelman Syndrome which brings with it limitations such as non-verbal, limited mobility, cognitive delays, and more issues that would take up too much space to list. Our 15 year old boy Lukas however smiles more…
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Angels in Action – Rylee’s Story
Celebrating the Abilities of our Angels By Keisha Tipton, Mom to Rylee, age 9 As a parent who has been injected into disability culture through a loved one, I feel we also have a separate and unique Angelman Syndrome culture. Our Angelman family is accepting, supportive, and non-judgmental; a culture that we are all proud of sharing with one another. Yes, we have trials and tribulations to overcome, but we are far from alone in this journey. We build each other up with words of encouragement and support. Each family goes through our own experiences. I’d like to take a moment to share with you our story. A story that…
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Angels in Action
Celebrating the Abilities of our Angels By Anne Chatteau (In French and English) François a 24 ans et est UPD. nous avons eu le diagnostic quand il avait 13 ans. Jusque là, il avait vécu presque comme s’il n’était pas handicapé malgré un écart de plus en plus grand avec les autres enfants. . Il a marché à 25 mois mais le langage n’est pas venu. Sinon, il était facile et s’intégrait dans les groupes sans poser de problème. C’est pourquoi, j’ai tenté beaucoup d’apprentissages avec lui, d’autant plus qu’étant professeur, je ne concevais pas que mon enfant n’ait pas droit à l’éducation. Il a eu un trotteur avant de…
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Angels in Action – Eddyto’s Story
Eddyto was born a healthy baby at 37 weeks. He has a sister aged 4 and lives in Guatemala, Latin America. Eddyto was diagnosed with Angelman Syndrome, del +, Class II, at 11 months of age. We have been working hard ever since with nutritional therapy, supplements and the NACD program. Eddyto has come a long way and we are doing everything we can to support him to achieve his maximum potential in health and development. In addition to having Angelman Syndrome, Eddyto took another hard blow at 7 months of age. His third set of influenza, DTP and hepatitis B vaccines was too much for his body to handle…
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Angels in Action – Billy’s Story
Angels in Action Q&A with Angel Mama Linda Rafert Yoakam Q. Tell us about your favorite outings? Billy loves to be entertained. And he’s not picky. He enjoys movies, sporting events like minor league baseball or indoor football, local community plays or Broadway-caliber plays, musicals, concerts. Those are some of our favorite outings. Because he enjoys outings so much, we’ve resorted to season tickets to events. Swimming and water activities are not the draw they once were in his childhood. Billy understands more than he’s given credit for…here he is at the Boston Public Library making sure I don’t miss the beautiful paintings on the walls being described by our…
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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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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…