Camden's Diagnosis: Amelia/Phocomelia Syndrome

This is Camden, he is three years old and was diagnosed with Amelia/Phocomelia Syndrome at birth.



How many people have Amelia/Phocomelia Syndrome?
I don't know of any exact numbers or any adults or children diagnosed with Amelia/Phocomelia Syndrome, but I do know a few who were diagnosed with Amelia Syndrome, Phocomelia, and others similar to those two. Amelia Syndrome is where a person is born without all four limbs. Phocomelia is where the person was born with shortened and absent limbs. There are several children around Camden's age who's limb-differences are very similar to his, but most of them were given different names for their diagnosis.

How does Amelia/Phocomelia Syndrome affect Camden?
Camden has both of his humeri, but does not have a radius bone or a ulna bone on either arms. While I was pregnant with him, his right humerus was growing 2-3 weeks behind and his left humerus was growing about 9 weeks behind. You can see the difference as his left humerus is half the size of his right humerus and his right humerus is smaller than the average three year old child's humerus. Camden also only has a few inches of femur on his left hip. He does not have femur on his right side or tibia or fibula bones on either side.

What causes Amelia/Phocomelia Syndrome?
There is no known cause of Amelia/Phocomelia Syndrome. I had an amniocentesis when I was pregnant with Camden and there were no chromosomal abnormalities. What doctors have told us about the cause of it is this is a thing that just "happens" sometimes or that me and his biological father both have a mutated gene for limb deformities. Also, if it IS a gene thing, it can ONLY happen when BOTH parents carry the gene. We have not had any further testing and will not have any further testing done unless Camden says he wants to look into it when he is older.

Will Camden be able to get prosthetics?
Yes! Our doctors at Shriners Hospital for Children told us that if Camden wants, he can start trying prosthetic arms when he is 7-9 years old. Also, we found out this past November at his last prosthetics appointment that this coming up November they're going to start working on figuring out a way to give him prosthetic legs!

Will Camden be able to have a successful and fulfilling life?
Of course! As long as Camden has an amazing support system, which he always will because we have great family and friends, he will be able to do anything he wants! Camden is already able to mostly feed and bathe himself, build with blocks, use things to write, draw and paint with, can climb up and down stairs, and pull himself into the upright position, so mobility hasn't and won't be an issue at all. There are other people very similar to Camden that are motivational speakers, one man that doesn't have any arms at all and works for NASCAR, and there is even a man who is a pro bass fisherman! The possibilities are endless! I personally see him being an engineer because he has a brilliant brain, but only the future can tell!    

What if I find out that my child is going to be born with a limb-difference?
Please contact me! I can most definitely give you advice and point you in the right direction. I am part of a great little support group for parents with children that have limb-differences and can add you to that too. There is also the Lucky Fin Project page on Facebook that has thousands of people with every limb-differences imaginable!

Comments

  1. I had the pleasure of meeting this adorable little guy yesterday. Immediately fell in love with him. It is truly amazing to see how well he could get around. He is very smart and within the first 5 minutes had me wrapped around his little arms. His every wish was my command. LOL... before I met him I thought I would feel sorry for him but after meeting him that is not the case. We, who are normal, think that Camden is limited because he does not have legs and arms as we do but Camden does not know that he is limited and can do anything he sets his little mind to doing. Camden is here on this Earth for a reason and I know that God has a very specific purpose and plan for his life and those of us who have the privilege of knowing him will be truly blessed!

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  2. This is our local (Irish) hero, Joanne O'Riordan:

    https://www.youtube.com/watch?v=f_nFXeg8Y2s

    https://twitter.com/NolimbsNolimits

    https://www.youtube.com/watch?v=xRk2TeaC_Qw


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