Andrew's Lissencephaly Fund
This is for our 2 year-old son, Andrew. He has a rare brain condition called Lissencephaly, or Smooth Brain Syndrome. There are many different ways to say it but medically its Lissencephaly. This condition completely disables our baby boy. He can't walk, talk, or play. He can't eat big people food because the part of the brain that controls that ability isn't there. Although he tries, he's bottle fed. He's unable to sit unassisted. We'll be getting him fitted for a wheelchair soon that his body can be supported in the right places. He is also afflicted by Epilepsy and Infantile Spasms (a severe type of childhood siezure).
Besides all that, our Andy is truly our Angel. He's the happiest child we have ever had the pleasure of knowing. Through it all he smiles, he laughs and he coos. He's just truly our gift.
Unfortunately Andrew's doctors appointments are in Houston, an hour and half away from we live. We've already had to reschedule 2 of his appointments to due expenses getting there.
My heart is torn in different directions when I look at our Andrew. Torn between absolute joy that he's alive and with us, complete sorrow that this beautiful child, our beautiful child is plagued by all this and despair knowing that we don't know how long we have with him.
With your help we'll be able to make ALL his doctor's appointments, pay for the medical bills/equipment that his insurance won't cover, and spread the awareness on a condition that only the parents of children affected know about.
I would like to tell you a little bit about Andrew and why it is so important for us that he gets help.
Andrew is the youngest of 4 children. He is the happiest 2 year old child we have ever had the pleasure of knowing. His condition completely disables him. He cannot walk, talk, hug, run, crawl, feed himself, play with his siblings. He cannot tell his father and myslef that he loves us or tell us when he feels sick. He doesn't reach for us because the part of his brain that controls that movement isn't there and yet he's literally the best thing that has happened to our family. He smiles and laughs when I want to break and cry. He lifts my heart with a single smile. He touches everyone's heart that comes in contact with him. He is our angel. If there is still good in the world, if there are still people out there who want to help an unknow child, please donate. Share his link on your facebook and twitter pages. Help our family help our son.
If you're wondering "Why would I give money to a complete stranger? I know nothing about them." Let me tell you a little bit about our families history and cuttent situation and why I'm asking complete strangers and friends for help.
Let me go back a few years. We lived in San Leon, a town only 30 minutes from Galveston, TX, when Hurricane Ike struck and devastated the Gulf Coast. Our life was turned upside down. We lost everything we had been working for. We've moved countless times and over the years we have literally barely been scrapping by. A few years ago it seemed that there was a light at the end of an extremely dark tunnel when my husband landed a good job in San Antonio while I was pregnant with Andrew. Then work stopped. The company lost all work and we lost our home, again. I've lost hope so many times it's not funny. Then we had our Andrew December 16, 2011 and we were terrified. How were we going to take care of 4 children? We've made it work, barely, but we've done it. We found out in June of 2012 that our beautiful Andrew was afflicted with a condition that could and most likely will end his life before he's had a chance to experience life. That news tore a hole in my heart that I cannot fix. Now we've found a place where we finally settle down but ALL of his doctors are in Houston. Over an hour away from us. Due to our situation right now we've had to push extremely important appointments back because we do not have the gas to get to them. Without these appointments he won't get the needed care that he needs. He needs a wheelchair that will support his body the way it needs to be supported and we can't afford to get to the fitting appointments.
This child is a blessing and he deserves the best. Please if there is any compassion left in this world please donate. If you cannot donate, do what you can and please Share this website with everyone you know! Please let people know that their help is greatly needed.
If you would like to get more information on Lissencephaly feel free to visit these links:
Medical News
MedicineNet.com
National Institute of Neurological Disorders and Stroke