Il weekend del 24 e 25 maggio 2024 ha visto protagonisti i bambini dell’associazione Energy Family Project in un evento dedicato al gioco, allo sport paralimpico e alla condivisione di esperienze uniche. Questo evento ha rappresentato non solo un’opportunità per i bambini di sperimentare nuovi device, ma anche un momento di crescita e confronto per le famiglie, il tutto all’insegna dell’inclusione e del supporto reciproco.

Un venerdì all’insegna di giochi, competizioni sportive e device spaziali

La giornata di venerdì si è svolta presso l’Ospedale Pediatrico Bambino Gesù nella sede di Palidoro, dove si è tenuto l’Open Day sull’attività sportiva adattata. Organizzato dal team del DH Neuroriabilitazione e Attività Sportiva Avanzata, coordinato dalla Dott.ssa Gessica Della Bella, l’evento ha visto la partecipazione del Comitato Paralimpico, delle officine ortopediche Itop di Palestrina e dell’equipe medica del Day Hospital.

All’apertura dell’evento, i partecipanti hanno avuto l’onore di ascoltare interventi di figure di spicco come il Direttore Sanitario dell’Ospedale, Dott. Raponi, Luca Pancalli, Presidente del Comitato Italiano Paralimpico (CIP), Marco Iannuzzi, Presidente del CIP Lazio e Daniele Pasquini, Presidente del Comitato Provinciale CSI di Roma. La Dott.ssa Della Bella ha illustrato un progetto ambizioso per integrare lo sport nelle attività ospedaliere, con percorsi specifici per avvicinare i bambini con disabilità alle varie discipline sportive.

Il nuovo campo da basket all’esterno dell’ospedale, incorniciato dal verde del parco, ha offerto l’ambiente ideale per sperimentare attività sportive adattate. I bambini hanno avuto l’opportunità di provare diversi device ideati durante il workshop “Crea il tuo device” tenutosi lo scorso settembre. Queste idee, sviluppate dai makers di Enable Italia e presentate alla Maker Faire del 2023 come esempi di disability-led design, hanno trovato una realizzazione concreta durante questa giornata di sport e divertimento.

Un sabato di workshop per i grandi e giochi per i piccoli

Il sabato è stato dedicato alle attività organizzate da Energy Family Project. La giornata è iniziata con una favolosa colazione, seguita da una serie di giochi, tornei e mini olimpiadi per i bambini, accompagnati da un team di animatori. I genitori invece si sono riuniti ed hanno avuto l’opportunità di confrontarsi ed ascoltare ricerche e studi.

Emilio Doda, laureando in fisioterapia presso l’Università degli Studi di Genova, insieme alla Dott.ssa Valentina Penazzi, ha presentato la ricerca “Indagine sulla protesizzazione precoce nel bambino affetto da malformazione congenita dell’arto superiore”. Questa ricerca ha fornito spunti importanti per comprendere meglio le esigenze dei bambini e migliorare le loro condizioni di vita.

Successivamente, è stato presentato il progetto degli Energy Coach da Emanuela Fronteddu, presidente dell’associazione, insieme al Dott. Roberto Noccioli e alla Dott.ssa Glenda Tripicchio. Gli Energy Coach, genitori e adulti con agenesia, hanno seguito un corso per combinare la loro esperienza personale con modelli di intervento psicologico, creando un gruppo di supporto per le famiglie. A partire dagli stimoli di questi due interventi, si è tenuta una tavola rotonda sull’inclusione, guidata dal Dott. Noccioli e dalla Dott.ssa Tripicchio. Il dibattito ha coinvolto famiglie, ospiti autorevoli e coach, discutendo l’importanza della rete di sostegno reciproco per affrontare meglio le sfide quotidiane. Tra i partecipanti, il Dott. Marco Traballesi, la Dott.ssa Gessica Della Bella, il Dott. Luigino Santecchia, il Dott. Daniele Zenardi e Sara Catelini hanno condiviso le loro esperienze e conoscenze, arricchendo la discussione con contributi preziosi.

Dopo un pranzo a buffet, il pomeriggio è proseguito con la compilazione del questionario “Indagine sulla protesizzazione precoce nel bambino affetto da malformazione congenita dell’arto superiore” e approfondimenti sulla ricerca. La giornata si è conclusa con la premiazione dei bambini che hanno partecipato alle mini olimpiadi, celebrando i loro successi e il loro impegno.

Conclusioni

Questo weekend ha rappresentato un’opportunità unica per conoscere, imparare e condividere esperienze, dimostrando che il desiderio di stare insieme e crescere come comunità può superare qualsiasi distanza. Un evento che ha saputo unire divertimento, ricerca scientifica e supporto reciproco, lasciando in tutti i partecipanti un ricordo indelebile e una rinnovata speranza per il futuro.

Through the application of the Disability led Design approach, the children of the Energy Family Project association have transformed into young volunteers and, thanks to their ingenuity and creativity, have conceived the devices of the future.

How did the idea come about?

“Create your device” is an event organized by volunteers to put children at the center of the creation of devices. Its first edition was held in Rome, in the setting of the Fabulous Village, immersed in the pine forest of Castel Porziano, over two separate weekends. A first appointment was on the weekend of September 15th to 17th, while a second appointment was from September 22nd to 24th.

The idea was born from an e-Nable volunteer, as well as a PhD student in design at La Sapienza University of Rome, whose PhD thesis investigates the possibilities of a new approach to design, led by people with disabilities.

The approach is that of "Disability led Design" and allows us to go beyond simple user participation, the latter rather becomes a starting point and provides an essential contribution to the project. In contrast to other approaches, disability-led design “seeks to speculatively respond to, amplify, or celebrate some aspect of the identity and culture of people with disabilities. Disability-driven design outcomes are characterized by a change in how we perceive and interact with a category of object, space, or system, and a resulting change in the meaning assigned to it” (National Endowment for the Arts, 2021, p .23).

In fact, more and more often even in the industrial sector, a user-based process is being implemented, in which the design of devices and aids starts from the users, and not from designers removed from the context and environment in which these aids should be used .

With the aim of stimulating children in their creativity and inventiveness, starting from skills that they acquire at school, this different approach to design has been tested, so that the children themselves generate ideas for new devices, placing them at the center of a real creative process.

The goal is, starting from the ideas that the children have developed, leave the space for e-Nable makers to delve deeper into those ideas and make them reality, printing new unique and personalized devices that can help children in daily life, play and sport. The devices imagined by children will be the result of their creativity and will respond to needs that are important to them.

The event was accompanied by moments of play, relaxation and sharing. In addition to the children, the parents and, sometimes, the children's grandparents were also protagonists. Experiences were shared, problems and needs highlighted, and finally measures were taken for new devices, which some children received during the event.

The first day

The event had two appointments, each lasting two days. The mornings were dedicated to activities led by e-Nable volunteers, while the afternoons were left to moments of leisure in the swimming pool and on the campsite.

On Saturday morning, after breakfast, children and parents were guided to discover the e-Nable project. In fact, all the families knew about the Energy Family Project association, of which they are an active part, but very few of them had any idea of the activity of the e-Nable volunteers. While the parents then listened to a more technical explanation of the project, the children were told the story of “Vittoria and the strange train”.

Thanks to the story of Vittoria and Doctor Protesius, the children began to understand the work of the volunteers, the functioning of the 3D printer was explained to them and they empathized with little Vittoria, starting to want a train all for themselves too .

Once reunited, the children and their families were presented with some examples of the devices printed by the volunteers and their functions. At the moment of discovering those little toy hands, the children got excited and tried to understand what the different aids proposed were for. Last but not least, the Bike Adapter, a device presented by the association at Maker Faire 2022.

The children were then encouraged to draw their dream device. The goal was to let them imagine devices that could serve their daily lives.

The second day

On Sunday morning, after all the stimuli of Saturday morning, the children's creativity was left free. Plasticine, sheets and rulers, scissors, colors and everything needed to try to prototype a first example of a device were made available to them. The volunteers tried to guide the children and their siblings in creative development.

Just like the children, the parents were also put to the test. They had to try to come up with functional ideas for new devices that their children could use.

Reflections

During these days, several interesting ideas emerged, which will guide the e-Nable makers in the conception of new devices to then share with the international community.

Furthermore, the entire process, which puts into practice the principles of Disability led Design, as well as the prototypes created from the children's ideas, will be described by e-Nable at this year's Maker Faire. 

The idea of the Bike Adapter was born in a period of maximum inspiration in the design of devices in 2020 by Michele Praga, not only passionate about model aircraft and a skilled pilot but with a strong note of genius in his mind: he is able to see a solution where a ordinary person would see only resignation. This gift of his combined with his propensity to help people with disability problems means that he has a real volcano in full swing. And like the best geniuses, how is an idea born? Obviously in my sleep imagining and dreaming about the device.

The idea was born precisely from the need to convey normality in daily life activities and to facilitate children's introduction to prostheses it was deemed necessary to design aids for everyday life including sport, which has always been an unspeakable sign of inclusion and group.

Until then there were few good solutions to allow people without hands to ride bicycles. The few existing solutions were too complex and fragile, often made of plastic materials, which could have broken in the event of a fall, resulting in sharp and dangerous edges. At that time it made extensive use of elastic materials (TPU) for 3D printing, a practically indestructible solution, in the creation of devices. In fact, unlike normal printing materials, such as PLA, PETG and ABS, it does not have the defect of delamination and resists high temperatures. The decision was to create a joint system to be fixed to the bicycle handlebars, which was in a single piece and exploited the elasticity of the TPU as a hinge, in this way an eternal and indestructible device would be obtained. After the first sketches of the project by hand, and the first CADs on the PC, Michele started with the first print, long and slow due to the extremely soft materials... the 10 January 2021 the first Bike Adapter was adapted to the bike handlebars and ready for testing. Michele, not having any disability, did a test by putting a sock on the fist of his hand to simulate the missing limb and started walking around the street; to his great amazement his project worked! After the first test he presented the idea to the Enable community and from then on the idea was developed. It took some time to go from a prototype to a definitive device and a lot of help from another community volunteer: Alessandro Villa, an expert in 3D design and graphics.

Until now the device had only been tested on Greta, but everyone's desire was to make it usable for anyone who needed it. In fact, it was necessary to make the device scalable and adaptable to the various needs of people with different limb sizes. To solve this problem Alessandro relied on a parametric modeling software called Fusion 360 and the turning point was precisely the adjective PARAMETRIC. In fact, the recipient family is asked to take essentially six measurements: the distance between the base of the elbow and the fist in the healthy limb, the distance between the base of the elbow and the end of the stump, the circumference at the end of the stump, the circumference at the base of the stump, near the elbow, the diameter of the manubrium, and the distance between the inside crease of the elbow and the end of the stump. And, without going into too much detail, by combining sketches, extrusions, circular series, fillets and other similar gadgets, it was possible to link these measurements with the creation of the famous customized 3D file.

One of the current limits is that at the moment it has not been possible to replicate the project on another online parametric modeling software called OnShape. Also in this case there is a professional version and a free one. We have migrated the project to the OnShape platform in view of future developments as it is a "user friendly" platform. This is the step to effectively make the project international, breaking the constraints of territoriality and giving anyone who owns a printer the opportunity to create their own device. Obviously we tried to reduce and simplify the intervention of the families as much as possible during the initial phase of taking the parameters by reducing the acquisition time of the biometric parameters in just 5 minutes to avoid errors as much as possible.

The first test in January 2021 brought so much joy and hope, tears and satisfaction to the inventor and creator of the project and to all those who supported him by believing in him. It was the beginning of something beautiful, it was a moment of great strength to believe more and more in the project and how much more normal it would make the children's lives, because there is nothing more beautiful than having a nice bike ride with friends. To think that with little, both in terms of money and time, you can allow a child suffering from agenesis or trans-radial amputation to ride a bicycle is irrelevant, and the emotion is even stronger.

Article by Giulia Mariani

It was just over a year ago when I started working on the first device for my daughter Greta, it was also the first step of this fantastic initiative that would soon become e-Nable Italia and that I am honored to coordinate. In the Energy Family Project association we had an idea: that of being able to donate devices to children in Italy, made by us, by parents and friends who wanted to help us, the idea of being able to give a little joy, a dream to our children ...

For once, try to overturn the perspective and try to transform something that is seen and experienced by many as a "defect" to be hidden into something special to be proud of.

This is the basic idea, but also the one that prostheses (real ones, we make devices, toys, which replicate a part of their functionality but which are not prostheses) can help children and adults in everyday life. who live the experience of an agenesis or a traumatic amputation and that we, in our own small way, with our "toy devices" can perhaps help to bring children closer to this world and make them more pleasant and interesting a device that otherwise would tend to suffer only because they are far from their world of play and fantasy.

Here, it all started from here, we met several people in this short journey that lasted just over a year, some with a decidedly orthogonal approach to ours and from which we kept well away, immediately ready to discuss armchairs or how to find and manage funds, others much more in tune with our approach which has always been to work from the bottom with humility, day after day, learning and trying to do better every time, ask for help too, but for what is strictly necessary and work, work hard…

I found fantastic new friends and trusted travel companions who have joined Massimo, Riccardo and Samuela, travel companions of all time, I quote here Alessandro, Michele and Piera, because they in particular have contributed, each in their own way, to create and place a really important piece of this small community that I write about today and that I represent, but the list is long and growing from month to month, our community is growing and I am sure together we can do great things.

The community of those who believe in us and support us is also growing, first of all the families and their friends, they really surprised us, supporting us and helping us to acquire resources and tools that not even remotely we would have imagined we could have only six months ago, this is a great satisfaction, I believe and I hope it means that we are doing well, but it is also a great responsibility, we must always do better and live up to the expectations of families, of all the friends who support us but above all of the children who expect us to we give him a dream.

In 2020 our friends supported us by donating € 1,520 to our micro campaigns in support of e-Nable Italia and to help us create the devices for our children, these funds allowed us to:

• purchase 17 spools of filament for printing devices
• purchase a Palette Pro 2S device for printing multi-color devices
• purchase all the consumables necessary for the construction of the devices

To date we have given away 5 devices, we are working on five more, we are carrying out experimentation activities to extend the use of existing devices to children who cannot use them at the moment and we still have other fantastic ideas that we are working on and that we will soon be happy to share.

On behalf of the Energy Family Project and e-Nable Italia today I feel obliged to thank you all for the trust and support you show us and to renew our commitment to do better and better, we are only volunteers, for none of us this is a job and none of the volunteers are paid for what we do, but our commitment is firm and, I think I can say it on behalf of everyone, the joy of the children when they open the package and find the device repays all the efforts and the nights made to make them happen.

Heartfelt thanks from e-Nable Italia.

Alberto Navatta
Chapter Lead - e-Nable Italy
Vice President of Energy Family Project