Giulio’s agenesis and the story of Samuela, the founder of Energy Family Project

One of the main goals of our blog is to tell more about the stories of the network in which we operate, talking about the daily work of orthopedic technicians, prosthetic users and associations operating in the field.

Even more in the month dedicated to the Limb loss and limb difference Awareness Month, we want to be the intermediary of beautiful but also difficult stories, those stories of rebirth and courage like Giulio’s story.

The agenesis of Giulio’s right forearm

Giulio will turn 6 on April 30 and he was born with agenesis of the right forearm discovered at birth. We know his story because his mother Samuela immediately dedicated Facebook and Instagram pages to her son’s story, sharing the smiles, the new discoveries and also the main difficulties that a family like hers has to face every day.

Although the restrictions related to Covid-19 did not allow us to visit her in Pomezia to also get to know Giulio, we were able to meet her “virtually” and learn more about her history and the history of her association.

Also because Mother’s Day is close, we would like to talk about Samuela Sarda, founder and president of the Energy Family Project association, a strong and courageous woman who, despite the initial understandable bewilderment for those who live in a situation like hers, did not get lost her spirit and from his Giulio she found the strength to be the spokesperson for all the families who need a reference to make children with limb differences live at their best.

The beginning of Energy Family Project

Energy Family Project is an Italian association that deals with families facing agenesis, amputation or congenital limb malformation of their children. It is about the union of several families in the national territory, who have found the same realities, the same stories and the same needs.

United they created an association, which is actually a real big family.

They are bursting with energy with projects and activities that allow families to be brought together so that no one feels left behind.

When we ask Samuela what are the main missions of the Energy Family Project, she clearly describes the objectives for which they work every day.

The dreams of the Energy Family Project association

The Mission is based on 4 objectives:

1. The first is to give immediate support to families by linking them together. These are followed step by step in the therapeutic and bureaucratic procedures that often lack slenderness.

2. The second and most important goal is to activate the Birth Protocol, a tool that allows children born with limb diversity to be followed from the first moment. In fact, there is no coordination between health facilities to guide patients towards physiotherapy, rehabilitation and then the adoption of a potential prosthesis.

3. Furthermore, we want the Physiotherapy and Pediatric Guidelines specific for our children to be integrated and updated.

4. Finally, we want the List of Products and Services Qualifying for Reimbursement (LPPR) to be updated, so that it includes technological and innovative devices.

Children and prostheses

Another very important aspect is the need for a child to immediately approach the use of a prosthesis.

Scientific studies show how important the body schema and its recognition are from an early age. For this reason, it is necessary to work immediately on the child’s field of view, indeed the higher the amputation, the more important it is to work on the body scheme through the use of prostheses.

When it comes to upper limb prostheses for children, we must certainly consider the growth factor, which involves a constant change in the size and therefore in the characteristics of the abutment. Also for this reason, Samuela explains that the economic aspect represents a problem for many families. In fact, children grow rapidly and prostheses must be adapted or replaced on average every 6 months / 1 year and a half and the amount of expenditure is often considerable, especially if we are talking about devices that are not included in the LPPR.

Also for this reason an innovative prosthesis, easy to use, and which also has an affordable price, would facilitate the use of bionic prostheses even for children, who would be immediately able to recover or discover the full potential of new technologies and have a perfectly normal life.

Before saying goodbye to Samuela, we ask her what she has learned from her personal and associative experience. She replies that the awareness acquired in recent years is surely the certainty that their children are unique, not different, and this allows each child of the Energy Family Project to feel supported and encouraged in realizing their every dream.

The association continues to implement initiatives even if it is still difficult to meet and organize events that involve all families due to the restrictions related to Covid-19. Despite this, we at BionIT Labs give a big good luck for the future projects of this beautiful project.

To find out more about the Energy Family Project you can visit their Facebook or Instragram pages or their website.

Keep following us, we will soon tell new stories of those who face limb differences as a challenge to do more and more and live a different and happy life.

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