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This is our story
Sandra and Maryanne
My wife Sandra with Maryanne our little angel in Central Park NYC.
This was the first visit to New York City in May of 2011.They went back in August of 2011 and October of 2011.Having surgery each time she is 95 % cured.They will go back in the Spring of 2012 to finish closing the malformation.Ever since Sandra found the doctors in New York life has been better for Maryanne and us.We are trying to get the word out for families facing this problem. Maryanne had her first surgeries here in South Florida and caused more damage than good.The right side of her brain was damaged a great deal,but she is still progressing for the better.They told us here that there was no cure.If you hear this they are wrong,because there is one and it is in New York City.I cannot begin to tell you all the stress this has caused us.Maryanne is an Angel of God and is stronger than we are,Any child facing this deserve the best.We have a group on face book called The Vein Of Galen Malformation Support Group and we would be glad to help you in any way possible.There are many families here facing this problem and many children that have been cured to 100% and are living normal lives now.
My name is Jeffrey and this is my family.
This was the first visit to New York City in May of 2011.They went back in August of 2011 and October of 2011.Having surgery each time she is 95 % cured.They will go back in the Spring of 2012 to finish closing the malformation.Ever since Sandra found the doctors in New York life has been better for Maryanne and us.We are trying to get the word out for families facing this problem. Maryanne had her first surgeries here in South Florida and caused more damage than good.The right side of her brain was damaged a great deal,but she is still progressing for the better.They told us here that there was no cure.If you hear this they are wrong,because there is one and it is in New York City.I cannot begin to tell you all the stress this has caused us.Maryanne is an Angel of God and is stronger than we are,Any child facing this deserve the best.We have a group on face book called The Vein Of Galen Malformation Support Group and we would be glad to help you in any way possible.There are many families here facing this problem and many children that have been cured to 100% and are living normal lives now.
My name is Jeffrey and this is my family.
UPDATE ...Maryanne was cured December of 2012, Since then she has been improving. We are hoping she'll be up and walking soon.We always put God first,He is the only one who gives life.No matter how bad life gets, Always!!! Put God first. The doctor's here cannot believe how well she is doing. Thank You God for DR.Alex Berenstein and his amazing team of experts for taking great care of the children in need. And a special thanks to Frankie Triska who made it possible for us to meet DR.B and get the help needed. Thank you Frankie for your support.
After living in Alabama for 26 years I never thought my life would change so much,But it is for the better. I have a wonderful wife & children.And a very loving mother in law. The good news Maryanne is cured now.
September 27,2013 Maryanne suffered another stroke
September 27,2013 Maryanne suffered another stroke
Visit us on facebook
https://www.facebook.com/groups/VGAMALFORMATION/
Treating Vein Of Galen
What can be done to treat it?
Fortunately this condition can be treated and children stand a very good chance of a normal development. In the past neurosurgeons have tried to obliterate the abnormal communications by tying off the shunts, but results and outcomes by this technique were often very bad. Nowadays, it is possible to enter the blood vessels by travelling with tiny plastic tubes up from the baby’s artery in the leg and depositing a glue in the abnormal shunt to shut it off. Sometimes several procedures are needed to shut off all the communications. This is usually done over a period of months or maybe years as each case is different.
Who can treat it?
This is highly specialised work!!! and very few people have much expertise in its management. Many doctors who face the challenge of such treatment have only ever seen one or two cases and, although they have experience in the guidance of catheters in adults and sometimes children, there are extremely few who have accumulated good experience.
Good results depend on understanding the disease and assessing the technical and medical challenges. Good management depends on excellent interdisciplinary
teamwork with anesthetists, intensivists and pediatric neurologists. This
experience has only been accumulated in one or two units
worldwide. New York City is one of these units. I'm trying to reach people on this so they don't have to suffer like we did.The children is what I'm most concerned with their health and life.They deserve nothing but the best chance,they didn't asked to come into the world and as adults it is our duty to ensure the best for them.People from all over the world come here.My wife and I have met some of the most wonderful people who will stand by you in your time of need.
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