e-NABLING Families Around The World • Turkey

One of the main hopes of our e-NABLE community of volunteers – is that parents and families of those in need of devices will not only learn how to create and assemble these devices together on their own, but will turn around and start teaching other families to do the same.

We love getting stories of families that have created hands for people they love and we know that you do too!

Recently, we saw a post in the Google+ group from Julian about 7 year old Ian and his new Cyborg Beast hand that they had created together for him as a family.

We asked a few questions:

Q:  How did you find out about e-NABLE? Where are you located?

We can’t remember exactly how we first heard about e-NABLE as we’ve know about it for quite a while.  My wife follows several upper limb difference groups on Facebook and we presume it was through one of them – maybe the Lucky Fin Project.  We moved to Ankara, Turkey in June and I was able to find a shop that sold 3d printers in Istanbul.  We first heard about the hand when we were living in Rabat, Morocco but we couldn’t find a printer there so had to wait.  I am British and my wife is Korean and we move country every few years for my job.

Q: What kind of need does your child have? Can you tell us a little about the hands or the situation?

Ian was born without any fingers on either hand.  None of the medical professionals we have seen has been able to explain why and his twin sister has the more traditional 10 fingers.  When he was 1 he had a policisation of the index metacarpal on his right hand to create a cleft and a bit of a thumb in the UK.  Between 2-5 years old he had several operations on his left hand in Korea to lengthen his peripheral metacarpals.  He is able to do pretty much anything his sister and other kids of his age can.  His only real frustration so far was not being able to swing on the monkey bars at his old school.  We made the Cyborg Beast because it looks so cool rather than because he needed it to improve his hand function (his sister is very jealous she doesn’t have one.)

Q: It looks like you made the hand yourselves! This is so awesome! Can you tell us if you had any help (and from whom?) and if you found it easy enough to create or was it really difficult? Any thoughts on the assembly of it and if your son helped at all?

Yes, we did 🙂  I bought an Ultimaker Original kit and the hand parts were some of the first things we printed.  We had to wait for a while to get the hand materials kit from 3duniverse through Turkish customs but the pdf instructions and the videos were all the help we needed.  The twins both helped assemble the printer and also put the hand together with me.  We had loads of fun and it was great family project.

Q: What are your plans now?

Ian’s hands are quite wide as a result of his operations so the palm from our first attempt is a bit too tight.  We are reprinting with asymmetrical scaling to see how that works but our next big task is to learn how to edit the design files so we can print a custom designed palm for him while keeping all the other parts to the same scale.  We are also going to print a Raptor for his right hand as getting the screws for the Cyborg Beast was a bit of a challenge in Turkey. So far we have only used PLA but I plan to get a heated bed kit for the Ultimaker when it is released so we can do them in ABS too.  We are also signing up as e-NABLE fabricators and hope we can help other people with upper limb differences in Turkey.

Q: What is he using the device for mostly? Do you have any photos of him using it that we can share? 

He is still getting used to it and it’s a bit tight so he isn’t wearing it for long periods of time at the moment – he mainly makes it into a fist and acts like he’s boxing me!

Q: Would you like to share anything with us about being a parent of a child with upper limb differences and what you think e-NABLE can do to help?

It is heartbreaking that our child was born with this condition. But it is important to accept them as they are and try not to interfear too much with what they are able to do. I think it is very important to be honest with the child and talk through whenever there is a difficulty to over come and remind them that everyone has some sort of difficulties regardless of their physical condition. We also think that we have to be very careful that this condition does not define them – just like everyone is different! We try to show him that he can do everything he wants therefore what he can do and cannot do is more about deciding what he wants to do rather than due to the physical condition he has.

We think e-NABLE is doing a wonderful job and it is great that so many people are giving their time and resources to help others.  All I can ask is that you keep doing the R&D, keep sharing the results and keep matching fabricators to people who need a prosthetic.

We think that raising awareness about congenital limb differences or loss of limbs is very important as this could happen to anyone in an accident. Just spreading the word so people don’t stare can make a huge difference to how people with limb differences feel.

If you are interested in having someone print parts for you so that you can build a hand for your child, want to sign up to donate printed hand parts to those in need of devices or are seeking help to get a hand built for someone you know – please email letsgetstarted@enablingthefuture.org and it will direct you to the intake form and help get you started!

“Tell me and I forget. Teach me and I remember. Involve me and I LEARN.” – Benjamin Franklin