Eccentric and Bent

Come on a fantastic voyage in the backwaters of my mind.

When my youngest son was born I heard the words “Amniotic Band Syndrome” for the first time. There was an indication in the ultrasound that he may have an issue with his left hand but his birth made it definite. The 3 days I spent in the hospital were spent vacillating between worry about his future and determination that he would not think of his self as less than. When I finally went home and could do the research on this syndrome I realized that he was blessed by the universe. He had all of the parts he was supposed to have. Some of them just looked and worked differently than most people. Only the 4 fingers of his left hand were affected whereas other children have had limbs severed from the bands. Some parents have lost the little ones they dreamed of due to Amniotic Band Syndrome. My guy is now a rambunctious two-year old. While he has some dexterity issues due to fused fingers, a sideways joint in his ring finger, and no joints at all in his middle finger he is able to use his hand. And with some minor surgery his dexterity can improve. (The surgery would separate the skin between his pinky and ring finger, also the skin between his middle and pointer finger. The doctor does not see any remedy for the sideways joint or the finger with no joints. My husband and I have not yet agreed to go forward with the surgery because we are not convinced that it is necessary other than for cosmetic purposes.) Some children are not as blessed. Some are missing digits. They need prosthetics. For many families prosthetics are cost prohibitive. Do you feed and house your child or do you buy him a hand. A hand can cost as much as a new car. And every time your child grows substantially, they will need a new hand. That is where people like the guys at Coming Up Shorthanded step in. They have developed a design that they have made available for free to the world. It is made on a 3D printer. They aren’t looking to get rich, just to fill a need for others. They have made an adult version for one if the blog authors. They have made a child sized hand for a little boy named Liam. Now they will begin work for another little boy. Check them out. Share the stories. And if you can donate, donate, Donate!

5 responses to “

  1. Jan Santorella February 27, 2013 at 3:11 AM

    I think you have mentioned some very interesting details , appreciate it for the post.

  2. descargar ares February 20, 2013 at 5:02 PM

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    • The Phoenix February 21, 2013 at 3:38 PM

      I am sorry that it took so long to get your comment approved. Your comments end up in my spam folder for some reason. I hope you enjoy reading the blog by Ivan and Richard, they are earthly angels. Please share their blog content so that others may learn about the awesome mission they are on. Feel free to stop by and visit with me anytime. Have a great day/evening/night/morning!

  3. comingupshorthanded February 20, 2013 at 12:10 PM

    This is Jen – Ivan’s wife (the fellow in the photo holding the casting of the hands and 1/2 of the amazing duo that has created Robohand) – thank you for such a beautiful blog post and for sharing your story as well.

    Blessings to you and yours 🙂

    • The Phoenix February 20, 2013 at 1:58 PM

      Thank you for your reply and it is nice to “meet” you. I am truly inspired every time I read the blog. All of you are inspirational; the guys for being so selfless and you for being such a wonderful support system. The beauty and joy that is being produced by your group is sure to come back to you. I pray that the sun continues to shine on you all for many years to come.

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