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jarcho levin
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kailyx's mom
Posted 2010-12-01 10:08 PM (#40360)
Subject: jarcho levin


New User

Posts: 1

Hello, my name is Shena and I have an eleven year old daughter with jarcho levin syndrome. I am looking for someone who could maybe share some information with us about this syndrome. We have been researching for many years and have found that there is limited info. and have been trying to find others with jarcho levin (spondylothoracic dysplasia) who might be able to answer questions that my daughter has that I cannot answer. Any response will be greatly appreciated.
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jessentyme
Posted 2011-01-30 2:02 AM (#40618 - in reply to #40360)
Subject: Re: jarcho levin


New User

Posts: 1

Hi Shena, My name is christi and I have an 8 year old step-son with jarcho levin syndrome. He is amazing. We (his dad and I) are in a simular situation as you searching for answers and looking for other kids that have this trying issue. Lorenzo has been through countless surgeries and treatments. Not sure if I can be of much help for u but I am willing to give it a try. My son asks me stuff all the time about his condition. He wants to know if there are more people like him and asked me resently if I could find someone like him that he could meet someday. I promised him I would do my best to grant his request. Even though he is not biologicaly my child i love him just the same as my own. I would do anything for him. If you are interested in talking more please feel free to contact me. I am also on face book under stevechristi jessen.
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Zoes Nana
Posted 2011-01-30 8:39 AM (#40619 - in reply to #40360)
Subject: Re: jarcho levin



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
HI SHENA, AND WELCOME TO THE 'VEPTR BOARD'....
ALTHOUGH ZOE HAS THE DX 'VATER/VACTERL' GENETICS TOLD US SHE HAS A 'PIECE OF 'JARCHO LEVIN'...
AND I KNOW THERE ARE OTHERS ON THIS BOARD WITH KIDDOS WITH THE 'JARCHO LEVIN' DX...
NEVER BE AFRAID TO PUT YOUR QUESTION OUT HERE...IF WE DON'T KNOW THEM OFF HAND, WE WILL FIND SOMEONE WHO DOES...
I WOULD ALSO LIKE TO INVITE YOU TO MY FACEBOOK PAGE
JOHANNA LAMBERT
AND I LOOK FORWARD TO HEARING MORE FROM YOU....
GOD BLESS...
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