Every once in a while, I get to share a letter from a parent of a child who has received their own 3D printed e-NABLE device…and sometimes they don’t just stop at sharing their stories and thank you’s with the e-NABLE Community…sometimes they jump right in to joining us!
Cam’s story below is written by his mother, Sarah and it is a story that will no doubt be built upon for years to come and one that I hope you take a few minutes to read today. This amazing story shows just how powerful it is to not just gift 3D printed upper limb devices to these families, but gives you a glimpse at what happens when our volunteers take the time to empower them with the skills and knowledge to create their own hands and pass that knowledge down to others who are hoping to be able to do the same!
Our Special Blessing – Cam’s Story
By Sarah Haight (His Mother)
“When Cameron was just under two years old, he started really noticing his Amniotic Band Syndrome differences; the short and missing fingers mostly. We have always been very open (hence his Facebook page to raise awareness) about his differences, surgeries, good days as well as the bad. You could tell at times it bothered him.
He would hold his little hands up to mine and compare them, then look back at his own and wrinkle his forehead… then put his hands together and point out the differences between his own two hands. Being a parent, I think it’s only natural to want to “fix” everything for your child. But this was something I could not fix, only try my best to make the best of it and keep things as upbeat and positive as possible. Some days, that was VERY hard.
My husband and I had talked some about getting him a prosthetic hand but being a single income family, the idea of a prosthetic device was something that was so far out of reach. They were running in the upwards of $80-120 thousand for something that would benefit Cameron. We also spoke a little about it with Shriners hospital but there wasn’t much they could give him that wouldn’t limit is function, since he wasn’t missing a full hand…just fingers. (While they were unable to provide a prosthetic for Cam, they have been a huge blessing by providing thousands of dollars worth of surgeries (about $300K worth) to help him gain more function in his hands and feet.)
Cameron (at a little over two years old) and I sat down at my computer and started researching Amniotic Band Syndrome exhaustively to search for any and all groups and/or products/services related to his condition without a real “goal” in mind other than to gain information. Cam just loved the pictures and cuddle time! Not much came up other than the sites I’d seen and read already. (Born Just Right, Lucky Fin Project, Living One Handed etc.) Again, we searched, hoping but failing to find anything new. Feeling a little bummed, I gave up for the day and skipped over to the Amniotic Band Syndrome support page on Facebook. We would visit there often for encouragement. Plus, Cameron was in awe of the other babies and kids with “hands like him”. While scrolling, we came across a post about 3D printed hands. I immediately replied asking for more information. It was then we learned about enablingthefuture.org.
While waiting for Cam to reach the age limit to receive a hand (the e-NABLE volunteers recommended 3 years old), we attended the Hands 2 Love hand camp in Florida where Cameron was able to try on a 3d printed arm that was much too big for him that some college kids had made. Cam’s face said it all. He was amazed and told us that night that he wanted a “robot hand” for his little hand. I still wasn’t convinced he could use it and even started to doubt the idea of putting him in something manmade because I was afraid it would send the message that his hands weren’t good enough as they were. The next day, Cam ran into a little girl who was wearing her 3d printed hand. He got SO excited and told her he liked her hand. The girl offered for him to try it. Cam took right to it. He even understood how to bend his wrist to open and close the hand to hold things. Seeing how the hand opened things up for positive communication and the immediate confidence boost made all of my previous fears disappear and I was on a mission to find a way to get Cam one.
Fast forward a bit… We were linked up with teacher Chris Craft and the M&M girls (as Cam lovingly calls them) from HandChallenge.com. Through emails and text, we talked about Cam’s background and sent photos of his hands and wrist measurements. Mr Craft then offered for Cameron to come to the girls’ classroom to try on one of the hands they had already made so he would have one to wear home while the girls made him a custom one.
It was a little over a two hour drive but was worth every minute. Cam took right to the girls, even let them help fit him for a hand there, and when it came time to leave, he was more interested in demonstrating how the hand could zoom cars around the racetrack than going back home. The teachers and staff around the building all stopped to awe over his 3D printed e-NABLE hand and Cam was like a new kid! He was beaming. I noticed that the usual negative looks and long stares were replaced with, “Hey, checkout that awesome hand!”… I don’t think I stopped smiling the whole drive back, watching Cam bend his new hand open to close over and over. He even sang about it! Haha!
Chris and I kept in contact over the next few weeks while the new hand was being made. Cameron was so in love with the one given to him that I don’t think he even realized they were making him another one. He wore that thing everywhere. To the pool. To eat. To sleep. It even took baths with it, often.
We made a trip back to visit the school and try on the new orange and blue custom “robot” hand when it was ready. The girls greeted Cam at the front lobby and gave him big hugs. I cried. What an awesome experience it was to see these 6th graders working so hard to help my 3 year old, who they barely even knew. My heart just melted! They sent us home with a couple extra hands to give to people at our local limb difference meet ups.
I went home that day, again, with sweet songs from the back of the car and my face hurting from smiling so much. It’s the best kind of pain!
After that day, I started referring people to Hand challenge, a page the girls and Mr Craft had set up to challenge businesses, schools, individuals, anyone really, to donate a hand or more to be placed with someone who needed a prosthetic hand. I was often updated on my friends’ kid’s hands. Getting updates and seeing how good it felt to see them so happy made me feel so good. Then when we met up with our limb difference group, a mom there was really struggling with the looks people were giving her daughter. I remember her saying, “I’d give anything to see her pick something up with two hands”. I still had the extra hand in the car and ran out to grab it. She teared up when we tried it on her daughter. I knew at that moment I was going to make it a point to learn how to make these hands so I too could help.
Being only 3, and wearing his hand everywhere, we needed “surgery” to Cameron’s hand. The hand as we knew it had met its match with Cameron and it wasn’t too terribly long before I was hitting up Mr Craft to see about a replacement hand, or pieces at least. While talking, I told him how much I wanted to learn to do this so one day when I could afford a printer, I could make hands. Plus I have several schools around our area wanting to get printers to get involved in the hand challenge as well. He offered one better…3D printing lessons! He told me to bring the hand along and we could fix it up. So, we set a date.
Cameron and I met Mr Craft a few weeks later. He taught me all of the basics, from cleaning, leveling, adding and removing filament to where and how to download the files, scaling the hands to fit and instructions on how to assemble the hands! Once I felt pretty confident (ok not really, I was super nervous!), we gave it a test run. I LOVED it! Cam was very sleepy (it was nap time) but even he was peering up to see what was going on. Before we left he gave us hands to assemble, looked at Cam’s hand and let Cameron try on a replacement. Then he asked if I wanted to take a 3D printer home to print from my own house….whattt??!!?! I nervously agreed. I was so excited!
Since then, Cam and I have been working on several projects. Firstly, we practiced for days assembling the hands we were given to put together. Cameron, at 3 years old, can tell you where every single piece goes, measure and cut the cords, choose the tools needed to assemble the hands, and put the printed pieces together in order. He also helps me tie the knots, cut out the materials like the Velcro and padding and he makes an awesome tester in that he can tell me if it’s too hard to bend or justtttt right. After learning how to properly assemble the hands, we played around learning how to use this machine specifically. Once I felt confident printing in general, we moved on to the real deal.
Together, we printed a hand in Cam’s favorite team’s colors…blue, black and silver for the Carolina Panthers. My Cam is a big fan of Cam Newton’s…and no, he wasn’t named after him but…he does look up to him.
Cameron helped print several parts of his hand. He loves pushing the PRINT button and helping line up the parts! He can even tell you how to open the program and add files. The memories we have shared through this have shown me why I was blessed with an ABS baby. The people we’ve met along this journey with E-nable have been nothing short of amazing. As I said before on Cam’s page, this has been a wonderful learning experience for us both… patience when letting a 3 year old help is almost as tough to come by as the patience needed to wait on a 3d printer to do its thing. Other than patience, Cam learned how to use several tools, about matching, thermo-fitting, following step by step directions and even how to scale things and print them (not alone of course… the printer gets VERY hot).
I am super proud of him and I think its safe to say I have a proud little boy here as well!
And the adventure isn’t over yet… I have schools lined up to get printers in the near future.
Guess who will be demonstrating the hands to the students? Cam.
And helping me teach the classes how to use the printers? Cam.
Also, who will be helping the students learn the assembly process? Yes, Cam!
He is as pumped about this, as I am!
Moral of the story: These hands do more than just help the kids. As a parent you want nothing more than to protect your child… but when your child is born missing a hand (or even parts of a hand, little hand, or even looses a limb after birth), there is very little you can do to help them.
You feel helpless.
That’s an awful feeling for any parent.
I knew that Cam could/can/will be able to do anything he puts his mind to, even without a 3D printed helper hand, but to be able to give him the confidence and pure joy I saw in him immediately after putting his hand on him (and ever since!) is something that makes my heart gush! It’s like I handed him confidence on a (bright orange) platter!
My older boys have told me Cameron’s robot hand makes it easier to tell their friends about their little brother’s differences. That was something I never expected.. it never even crossed my mind at all! I guess it all comes back to the whole “icebreaker” bit… and what better way to bring it all up, than a cool robot hand!
e-NABLE Community and Volunteers, you are giving us parents something special. I don’t know if you’ve ever thought of it in that perspective or not but its true. It’s a wonderful feeling and something I haven’t felt since he was born, until he put that hand on in Chris’ classroom.
Keep up the great work and please let everyone know that we (the recipient’s parents) appreciate the hard work and help of the volunteers so much more than we can ever express in words. It’s a priceless thing you are giving us all…siblings and parents included!
And Mr Craft, Cam and I are just getting started. We have some even bigger things up our sleeve so be on the lookout for that in the near future!”