Klippel Feil Syndrome Kids
These are the faces of all the kids whose mom's have contacted me and given me permission to share their information and their pictures. I am hoping to be able to provide each of their stories with you as well. Our children are so rare that it is amazing when you can find just one other person who can relate. We all have each other if they so choose. Together we can share our experiences, successes and failures all for the benefit of our special children. Together we can shed some light to our own medical community to make sure our children get the ultimate in medical care!!
Gustav
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| 3 years old, Sweden ~ Mom is Susanne |
Chase
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| 3 years old, KFS~Mom is Vicki |
Ford
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| Duane Syndrome ~ Mom is Amber Weinert Update from Amber - Ford does not have KFS!! YAY!! He has been sick on and off since October, so the doctors and parents are working to help this cute munchkin get better. He is now 17 months old. (6.22.12) |
Byron  |
| almost 7 months old~Mom is Jordan possible KFS |
Dylan
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| 2 yrs old~Mom is Erica Dandy Walker Syndrome, possible Wildervanck without Duane Syndrome. MRI was done KFS has yet to be confirmed due to impending surgery for fluid on the base of his brain. Surgery May 15th. Confirmed KFS on May 17th, 2012 |
Tommas
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| Tommas,
Italy, 2 Years Old~Mom is Frederica KFS |
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Nolan
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| Nolan, ~5 months old ~ Mom is Ali Moving to Atlanta to get care with CHOA |
Molly
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Molly, 8 months old~Kim is mom
Thought she had Duane Syndrome but doesn’t. Still testing to figure out what’s going on. |
Beutiful fotos of beutiful children!
ReplyDelete/ Jonna from sweden
Hi , from Sweden . I have a son with KFS but he is in his teens;) nice to see your children they are so pretty!
ReplyDeleteLove
Hello im a mom from the netherlands my son has klippelfeil but in Holland is no plan...we can help us..kimmbrakerrowaan@gmail.com thanks
ReplyDeleteHi, I was diagnosed with KFS, and have 2 daughters that were diagnosed with many different things, but no one ever gave any official diagnoses yet. One is 22 , the other is 19. We're finding out more and more things as we go along, but some Dr's believe the older one could have KFS, but the other is marfanoid, has connective tissue problems, possible Ehlers Danlos, dysatonomia. POTS,peripheral neuropathy, but as of yet, has not been diagnosed. We cannot get a Doctor who can tell us anything, without sending us to a zillion different specialists, It definitely is harder to get diagnosed and treated for rare diseases after you are older. I;m glad you are able to help Thomas , he;s adorable, with some of the many problems that come with KFS. Thank you for posting this, it's inspiring. Thanks Thomas!
ReplyDelete