tag:blogger.com,1999:blog-7211877405615199911.post4375406787239620120..comments2023-10-14T13:02:24.235-07:00Comments on Life with Rhombencephalosynapsis: The Questions You Really Want to Ask?Kristenhttp://www.blogger.com/profile/08397695241403505531noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-7211877405615199911.post-56814843035908940262017-09-26T19:47:43.486-07:002017-09-26T19:47:43.486-07:00Hello. My name is Amie and my sister had Rhombence...Hello. My name is Amie and my sister had Rhombencephalosynapsis. She passed away 5 years ago, a month away from her 20th birthday. I just wanted to comment on your question of 'how will it effect my other children?' My dad raised us as a single parent. He often felt guilty that my sister received more attention than I did. I personally was always very understanding of that part. However I struggled with the fact of knowing her life expectancy and HER day to day problems. Her lungs were very bad and she was on high oxygen , not to mention all her other problems. So what I am trying to say is, remember the siblings may be in emotional turmoil as well. Sending hope and love your way! XoxoAnonymoushttps://www.blogger.com/profile/05375876753745545273noreply@blogger.com