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VEPTR Sites/Hospitals -> UK | Message format |
suzanne |
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Regular Posts: 65 | Hi everyone, i was talking to Samuel's genetic specalist about the diagnosis and a question that was answered got me thinking he told me that because Samuel has hearing, eye and spinal problems then a diagnosis of oav is concluded and that it was just one of those things that happened when he was growing in the womb as all his parts affected are more or less developing at the sametime. however this diagnosis is not 100% because he doesn't know where the lung condition sprung from. I'm just wondering there for how many children actually have veptr along with some form of facial disfigurement. Thanks Suzanne | ||
Sally |
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Hi Suzanne, Have been reading a few of your posted messages and just thought that I should let you know that our son Freddie had his VEPTR fitted by David Marks at the Birmingham childrens hospital 2 weeks ago. We were originally under a guy at Stoke on Trent (where Freddie was born) but a friend gave us Mr Mark's name and we've never looked back. In our experience he's absolutely brilliant. He did a growth arrest on a hemivertebra back in February and then this recent op. Him and his team are based at the Royal Orthopaedic hospital at Sellyoak. Let me know if you want any more information. My email is [email protected] Sally | |||
Rhonda |
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Extreme Veteran Posts: 308 | Madi was born with a "crooked" face. I like to say she has character. Seriously, she has won a ton of photo contests because her face is "different" and, of course, beautiful. She also has some severe eye issues: severe cataracts and very near sighted... teeth issues are beginning now that her big girl teeth are coming in (she is eight). I cannot help but think these are all related, although no one has ever said as much in a direct manner. Hope this helps! Rhonda | ||
Jubi2U |
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Lizzy was a very scarry looking baby. She had an eye on her forehead! They said her mandable was missing and she would "need some work". We put a helmet on her when she came home from Guatemala, although the doc said it most likely would not work because she was older than when they usually do it. It worked like a charm and now she looks great. Oh, and her mandable looks just fine. Her face was just soooo asymetric, but now as long as we keep her hair long you can't tell her head looks funky. | |||
Zoes Nana |
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Expert Posts: 3970 Location: Plymouth, Pennsylvania | DEAR SUZANNE, ZOE ALSO HAD HEAD AND FACE ANOMOLIES... SHE USED A HELMUT FOR ABOUT 18 MONTHS, AND IT MADE THE WORLD OF DIFFERENCE... SHE THOUGH, STILL HAS A HEAD SHAPE THAT IS A BIT DIFFERENT AND ALSO HER FACE IS UNIQUE, BUT BEAUTIFUL... ZOES DX IS VATERS/VACTREL... ZOE ALSO LIKE RHONDA MENTIONED HAS TEETH ANOMOLIES, ASSOCIATED WITH HER SPINE ANOMOLIES... GOD BLESS... | ||
Guest |
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Rhonda - 2005-11-28 9:04 AM all Madi was born with a "crooked" face. I like to say she has character. Seriously, she has won a ton of photo contests because her face is "different" and, of course, beautiful. She also has some severe eye issues: severe cataracts and very near sighted... teeth issues are beginning now that her big girl teeth are coming in (she is eight). I cannot help but think these are all related, although no one has ever said as much in a direct manner. Hope this helps! Rhonda | |||
Guest |
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Sally - 2005-11-28 7:01 AM Hi Suzanne, Have been reading a few of your posted messages and just thought that I should let you know that our son Freddie had his VEPTR fitted by David Marks at the Birmingham childrens hospital 2 weeks ago. We were originally under a guy at Stoke on Trent (where Freddie was born) but a friend gave us Mr Mark's name and we've never looked back. In our experience he's absolutely brilliant. He did a growth arrest on a hemivertebra back in February and then this recent op. Him and his team are based at the Royal Orthopaedic hospital at Sellyoak. Let me know if you want any more information. My email is [email protected] Sally | |||
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