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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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A Cure for Louie
By Terry Jo V. Bichell, MPH, CNM (PhD candidate) Nashville, TN February 26, 2012 I learned, while traveling in Nigeria long ago, that the child who follows twins is supposed to bring luck, or be lucky, or carry some kind of amazing happy blessing. I remember thinking about that luckiness when I saw Louie’s squished newborn face, just after his cord was cut. Louie was born in February, 1999, sweet, social and sleepless just like his big sisters. We didn’t learn until a year later, when we sought a reason for his inability to sit up and crawl and babble like all the other playgroup babies, that he was born without…
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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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Potty Training Tips
By Keisha Tipton, Mom to Rylee age 9 Here is Rylee’s data form that I use. -I simply mark the date and time that I took her to the bathroom. -Then I place a check mark whether she went #1 or #2 in the potty. -In the comments section I write whether her pull up was wet or dry. When she stays dry for weeks on end I switch her to panties. For traveling, I still use Pull-ups. There are times she can even wear panties overnight as long as she goes good before bed, doesn’t have too much to drink and has good seizure control. When she starts having accidents…
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Editor’s Letter – January 2014 Edition
Happy New Year!! I am so excited to welcome in 2014!! Last year was wonderful. As you know we first launched Angelman Today over the summer and had such a great response with support from the community and the scientific and medical professionals involved with Angelman Syndrome. I am hopeful for the future with the ongoing research projects funded by hardworking foundations across the globe. I am so very happy to see the alliance of foundations in funding research. I not only wish you health and happiness in the new year, but will search high and low to find you information, products, and services to help make your today easier…
