Is there anyone that knows how to go about making a web page or posting regarding My Grand-Baby Olivia Serenity? She has a rare genetic disorder called schizencephaly.. this condition is life threatening and includes many other conditions that are very severe. She used to have several seizures a day and now she has aprox.. 3-5. This little girl and her mom have been threw so much. The seizure medications she is taking has her sleeping so much that physical therapy and interaction is severly limited. What her mommy is trying to do is get set up in Bangor; so she can be part of her daughters life daily. She needs help from all of us to make this happen. We have been in Bangor for the last 5 days staying at the Ronald McDonald House. They have been so amazing. So... if you know anything about how I can get a page up for donations and/or encouraging words/post as well Id be ever so grateful. If anyone wants to know more about her condition please feel free to ask. Olivia is blind, deaf, eats via a g-tube, can not smell anything and is bed and chair bound most of the time, unless her amazing care team and her mommy pick her up and sit with her on their lap. The facility Olivia lives at currently is called the Elizabeth Levinson Center. The care team are Angels. One goal right now... for Olivias mommy is to live here in Bangor. So anyway.. if anyone can help this amazing little girl and her courageous mommy with this transition; for mommy to be just a short ride away and be able to see her baby every day, participate in her daily care and tuck her angel in every night. I would and I know her mommy would be touched beyond words. You see every day that Olivia Serenity is breathing and with us is a miracle. Her time here with all of us is one day at a time.... and her mommy wants more than anything to be close by to treasure every moment. On a closing note::: could all of you who get this message take 5min of your time and look up Olivias Diagnosis? It will change your thought process regarding how serious this diagnosis is. Its a rare genetic disorder that is still in the research phases and what doctors are doing is treating the symptoms only because so little is known about this condition. Olivia and her mommy.... need each other every day and living aprox 2hours or more away has kept them apart tooo long. Please help these two beautiful angels in anyway you can. Thank you
Posted on: Sat, 16 Aug 2014 04:33:11 +0000
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