As Evan and I processed this over the next few months, there were more questions than answers. The unknown was truly terrifying. Avery Matthew Stone was born on November 14, weighing in at close to 9lbs, like his 3 siblings. As Avery was handed to me for the first time, all I could think to do was reach for his left hand. As I felt the absence of his tiny fingers, the loss of his normal childhood flashed before me, and my heart ached for him. But that moment was fleeting.
Avery is perfect. He is healthy and his right hand is normal. Avery can do every single thing our other babies could. Avery was made in God’s image and God does not make mistakes. The doctors have run tests and he’s been seen by specialists, but the bottom line is that they just don’t know why the congenital amputation occurred. What they have determined is that Avery has a functioning wrist, which is a huge blessing. He has a mass of tissue after the wrist, which is almost like a closed fist that he can use to assist his other hand. He’s now 8 months old, he crawling, sitting up and pulling himself to a standing position already. I knew this baby was going to need to be strong, which is why I chose Philippians 4:13 to put over his crib. He is already proving that he can do all things.
Our goal is to design and build a hand that will be useful to Avery as an infant, mainly for eating and holding toys. He tries to use his left hand now and we want to encourage this as much as possible, especially to avoid any muscle atrophy that may occur in the left arm. The orthopedic surgeons we’ve seen so far have told us that he’ll most likely reject any prosthetic device because he’d lose the sensation of touch. Most research shows that children reject prosthetics if they’re introduced after the age of 2, but there is not much information when it comes to prosthetics for infants. We believe that the sooner Avery has a device he can use, the more likely he’ll accept it. At some point in the future, he can choose to use a prosthetic, or not. We are going to provide him the experience of using one now, and adapt it for him as he grows, and as his needs change.
Through some research online, we have found an awesome community of people that are using 3D printers to build prosthetics at home! There are open-source designs for 3D printed hands, which is amazing. Evan has been able to get some basic training to use a printer and with his engineering experience has been able to take his knowledge and apply it to designing a hand that Avery can use now. Below is an example of a hand Evan printed using an open souce design and a borrowed printer.
In Evan’s words, “My long term vision is to build a hand for different tasks. It should be flexible and rigid in different areas. I first want to build something he will wear periodically and to design a way to keep it on. I want to build a hand for simple tasks like picking up toys, food, touching objects. Perhaps even a hand that dispenses food that would seem like a fun toy to him, but he’d be using his left hand to eat with! Eventually, we will adapt a modular design that interfaces with the wrist piece. The wrist movement can power finger movement, or a flexible piece for more complex tasks. I think we are in a unique position. 3D printing is affordable and is rapidly advancing. I have an engineering background, and CAD modeling experience. We will observe his changing needs every day. We can quickly re-size and adapt designs. There are large and supportive communities that share information. We understand that we will likely go through many iterations before getting it right. It’s a lifelong journey with Avery and we want to help him now in the way we are capable of.”
What is even better is that once we have the equipment needed, not only can we print for Avery, but we can serve others in our community. There is an organization that connects people that need a 3D printed hand device with people that have the resources to print them at home. How awesome that our journey to help Avery will in turn allow us to help others! What seemed to be a devastating prognosis a year ago, has turned into a journey that we can honestly say we are excited about. Avery is such a blessing to us and we look forward to using what we learn in turn to help others. We thank you for your prayers and for any financial support you can give.
We are starting a fund for help with the following:
Multi-material printer upgrade
3D printer filaments
Orthopedic padding and tape
Other tools and hardware for printing and assembly
3D CAD Software
Costs associated with casts and 3D imaging of the arm
We appreciate any donations, and please consider forwarding this to anyone who might be interested in the project. We will be providing updates via Facebook as we progress.
-Jacqueline and Evan
- Matt & Monique DeMartini
- paul lux
- John&Karen Sivley
- Steve Sanderson
- GoFundMe Team
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