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See the complete list of topics.

Facebook | Facts about Angelman Syndrome | Family Related Topics | Female Issues | Financial Planning



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Facts about Angelman Syndrome

Use the following link to read the 2009 document written by Charles A. Williams, M.D;  Sarika  U. Peters, Ph.D.; and Sarika U. Peters, Ph.D.
http://www.angelman.org/_angelman/assets/File/facts about as 2009 3-19-10.pdf

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Family Related Topics

Angels take an enormous amount of time and energy, and often that takes focus off of the marriage or the other kids.  To try to combat this, we have instituted date nights for the parents, and also special nights with the other kids individually, where the angel stays with a “sitter” so that the outing can progress somewhat normally.  We have taken vacations without our angel, too (which feels odd), but also preserves some sanity for the rest of us. But, it is a constant struggle not to overlook our individual needs and those of each other while looking after our angel.  It is really a family project!
Terri Spielman

Start early and involve the whole family. Siblings will either worry about the enormity of the responsibility awaiting them, or not realize it until it arrives. Having the early conversations help.
Amberley Romo

Your family may never understand what you go through as the parent of an angel.
Stephanie Sullivan Modesto, CA  angel Jeremiah “JJ”, age 8 

Find ways to keep the family involved even if they don’t live nearby. My nephew’s parents have created mailing lists and a group to share ideas. My family posts information on a private yahoo group.
Darlene Bisson

Try to do activities with other children in the family and your spouse without the angel. They need that “center of attention” time. That being said, we do try to include our Angel in most family activities.
Sandy Blagg  Grayson, Georgia  angel Elizabeth, age 13   Del+

Don’t forget that extended family (grandparents, aunts/uncles, etc.) is in need of support and encouragement over your child’s diagnosis, too. Encourage them to seek out other extended family of AS individuals via social media like Facebook. This can be both beneficial for them, as well as helpful to you, especially during the initial phases of your diagnosis.
Rachel Brewer  N. Little Rock, AK  angel Ava, age 4

Our son has two older siblings. It is difficult to give them as much attention as Mario. We’ve talked to them so they will understand that Mario is not the only special one in our family. We also try to give them each some special time once a week.
Brisia Barba  Chihuahua, México, angel Mario, age 9

When our older daughter left for college, our “world” changed considerably. We are an extremely tight knit family and her sports and social activities had kept us busy and involved with her friends’ families.  Our angel was part of all of that, too. When our older daughter left for college, her absence left a huge void and we had to create a “new” daily life with only our angel at home.  Respite hours were very important during this time.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

My simple advice for your marriage is to hang in there and share responsibilities.  My husband and I have been married for forty years, our angel still lives with us, and we have survived the tough times together.  We are best friends and our “unique lives and challenges” have made us the strong couple we are today.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Female Issues

Our daughter began her menstrual cycle at the typical age of twelve. We discovered that her periods weren’t as big a deal as we feared.  Ibuprofen helped with discomfort and we were proactive. We started using birth control pills with our daughter at the age of sixteen. There were many reasons her doctor recommended this, one of which was to decrease her risk of developing ovarian cancer. In the beginning we did the “placebo week” (the final week) every third month only.  The lining of her uterus thinned and she eventually had only a tiny bit of bleeding.  Now, we skip the placebo week all the time (the GYN prescribes it that way) and she hasn’t had any spotting at all.  Her gynecologist is female and has a heart of gold!  When our daughter was having general anesthesia for eye surgery, she came to the hospital and did a pelvic exam and pap test then.  She is very sensitive to the fact that it would be traumatic and very difficult to do an exam without anesthesia.  In conclusion, we are vigilant about any signs that could indicate serious medical issues as our daughter ages into her 40’s, 50’s, etc.
Alice and Mark Evans  San Diego, CA  angel Whitney, age 33

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Financial Planning

See the ASF Financial Resources page.

This is a contact for those who reside in Illinois.
Bill and Becky Gohs, Eureka, Illinois Maggie age 3, UPD

Help Me Fly
I got the idea to start Help Me Fly Inc. from hearing other people’s struggles. My son has Angelman Syndrome and all too often I hear about other families struggling with their insurance companies to get items that without their approval we could never get. Some of these items can really make a huge change in these peoples lives. I just always read their stories and wish there was something I could do to help them. So with that I started doing research on how to start a non-profit and started Help Me Fly Inc.

My Goal for Help Me Fly Inc. is to help families obtain these items that are too expensive to pay out of pocket for and that insurance does not cover. These items can be anything from wheelchair ramps, enclosed beds, or home improvements that will help families in their everyday lives. These are just examples and are not limited to what was mentioned. If you need help please contact us as we would love to help.
Lana Kruge

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