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Regular
Posts: 65
Location: northamptonshire, uk | hi, am a new member to site. Our daughter Anna is nearly months old, she was born missing both thumbs with also radial problems (the wrists) and clubbed arms. she developed progressive scoliosis of the thoracic spine. she is being put in a cast jacket in the next few weeks as they are trying to slow down the curve until they can operate to in insert the veptr. we have been in touch with many people to do with the hands but have struggled to find anyone with the scoliosis with a child as young as Anna. we live in Northamptonshire and are under Mr. Fairbanks at the Nuffield in oxford. we would love to hear from anyone that could offer any advice. Anna had many syndrome tests when she was born but they are now testing for "Holt-oram" syndrome. Hope to hear from you all, sorry it's so long winded.
Annette |
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Elite Veteran
Posts: 833
 
Location: Chittenden County Vermont | Welcome Annette, you are not longwinded at all. I hope that you find the support that you need. There are many folks from England who uses the site I am sure they can be helpful. Big hugs, I know how scarey and exhausting all of testing can be especially when they are talking about your little girl like a speciman- I had to snap a few docs out of that mode in a hurry LOL.
Happy new year
Susanne |
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Expert
Posts: 3970
 
Location: Plymouth, Pennsylvania | DEAR ANNETTE,
WELCOME TO THE VEPTR BOARD...
GREAT TO HAVE YOU HERE...THANKS FOR SHARING ANNA WITH US...
WE ARE BLESSED HERE WITH HAVING FAMILY SUPPORT FROM ALL
OVER THE WORLD...THE DOCTOR AND THE AREA YOU ARE IN SOUNDS FAMILAR,AND
I AM SURE YOU WILL SOON BE HEARING FROM SOME FOLKS THAT ARE PRETTY
CLOSE TO YOU, AND PERHAPS EVEN USE THE SAME DOCTOR OR HOSPITAL...
ZOE HAS ALSO HAD MANY OF THE "SYNDROME TESTS" YOU MENTION, AND FOR HER
SHE FALLS INTO A FEW...HER DX'S ARE VATERS SYDROME, KLIPPEL FEIL SYNDROME,
XXX SYNDROME, AND I CAN GO ON AND ON, BUT ALL THAT SAID...I AM SO AMAZED WHEN
WE ARE MEETING WITH A DOCTOR, WHO HAS NEVER SEEN ZOE, AND AFTER READING AND REVIEWING
HER RECORDS WALK IN THE DOCTOR, AND THERE FIRST REACTION IS, THEY CAN'T BELIEVE WHAT THEY SEE..
WHAT THEY SEE IS THIS BEAUTIFUL LITTLE GIRL, FULL OF LIFE, AND JOY....AND NOTHING LIKE HER
MEDICAL RECORDS WOULD HAVE LEAD THEM TO PRECEIVE HER....
I QUESS WHAT I AM TRYING TO SAY IS THAT WE CAN NEVER JUDGE A BOOK BY ITS COVER...
ZOE'S LIFE IS WELL BEYOND TEST, AND MEDICAL RECORDS...HER LIFE IS FILLED WITH SOME HARD TIMES,
BUT IT IS NOTHING COMPARED TO THE LOVE AND JOY WE LIVE IN WITH HER AT OUR SIDE EVERYDAY...
I KNOW THAT AT TIMES THINGS WILL BE ON THE DIFFICULT SIDE FOR ANNA, BUT SHE IS GOING TO
BLESS YOUR LIFE IN WAYS YOU CANNOT IMAGINE...
GOD BLESS YOU, AND I LOOK FORWARD TO HEARING MORE ABOUT ANNA....
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Regular
Posts: 65
| Hi Annette, I'm in north staffordshire. there is a good consultant up here called dr jasani he deals with scoliosis and is very experienced in this area. My son Sam is 21mths and also has scoliosis and fused ribs with butterfly verts and hemi verts. If you want to get in touch with me your welcome use my mailing address shown. [email protected] and we can take it from there.
Suzanne |
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Regular
Posts: 65
Location: northamptonshire, uk | Hi, thanks for the replies. I logged on this morning to find three replies, all very welcoming. it is true that Anna is a very happy girl, very playful and content. Just like Zoe, people can not believe how "normal"!! horrible word I know, she seems when they meet her. when you read in black and white the long list of medical jargon that comes with Anna it seems unreal. we've already had pollicisation op's to give her thumbs so we just look at this next treatment as another step nearer to the end of it all. Meanwhile we have a daughter who gives us alot of joy and a beautiful sister for her two brothers. thanks Suzanne I will certainly be in touch with you soon.
Annette |
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Elite Veteran
Posts: 806
Location: Divide, Colorado | Welcome Annette and Anna (and the rest of the family)! I'm sure you'll find much support here, as we all have. Feel free to ask questions! Anna sure is a cutie!! |
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | Welcome Annette! Welcome to the board. I am sure that your daughter is a wonderful sister to her two brothers as Celina, my scoliose-child, is for her two brothers. I am sure she is bringing you a lot of joy in life. Hope to here more...
Chris
Where is your village or town? I have a friend in Northampton, is it (nearly) the same?
Edited by celina 2006-01-03 6:15 PM
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Expert
Posts: 2039
Location: Springfield, Mo. | Welcome Annette and family. I am sure you will find the support and answers you seek on this board. I posted this on another thread but I will add it here too. Anna is a cutie and with those big blue eyes I am sure she gets a lot of compliments. Once agian WeLcOmE.
Tammy |
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Expert
Posts: 3243
Location: Utah | Welcome Annette and Anna and family! This is a great place to share experiences and learn from others. Its still very interesting to me to hear how many different medical conditions there are out there, that the VEPTR will help. Amazing. Looking forward to getting to know you and your family. |
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Elite Veteran
Posts: 697
Location: Alexandria, Virginia | Annette,
Welcome to you and your family. Anna is a real cutie. Hope you find lots of love and support here.
Cheers,
Cindy |
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Expert
Posts: 1582
Location: Greenbush, Minnesota | Hi Annette~
Sorry for the delay in welcoming you to the board!! Your daughter is a cutie! You've found a great place for information, support and friendship.
Take care.
Janita and Emily |
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