"I want to reassure other parents" - Saori's mom Laura's testimonial
Hello Laura. Can you tell us about your daughter Saori?
Saori is a 5-year-old girl. At the age of 8 months, she had her leg amputated due to agenesis peronei, which means that her femur was shorter. We took the decision to proceed with the amputation, as otherwise there would have been a gap of several centimeters between her two legs.
How did you come to discover U-exist?
It was thanks to Saori's prosthetist, whom I met when she was 9 months old, that I discovered U-Exist. As soon as she received her first walking prosthesis, I was in direct contact with U-Exist. They showed me different designs and also adapted illustrations that Saori liked. Saori changes her prosthesis every 1-2 months, and I've kept all her old ones in a box.
How does she live with her prosthesis?
She's doing very well, because she's never known her natural foot. She's learned to walk with her prosthesis, so for her, it's perfectly normal.
How does she react when she discovers her new prosthesis?
First, there are several fitting stages at the prosthetist's office. We try on the prosthesis naked, because it has to be adapted to the leg, and that takes some time. We return to the prosthetist at least 2 or 3 times for this stage alone. Between these visits, I receive the patterns proposed by U-Exist, which I show to Saori, and then these patterns are adapted to the prosthesis fabric.
What's life like at school and with his friends?
Right from the start, I asked the teacher to show Saori's prosthesis to the whole class and explain her situation to the children. Things have gone well overall, with the children sometimes looking at it, being curious and touching it, but reactions vary from one child to another. In summer, especially when I put her in a dress or shorts, it attracts a lot of attention and a few reactions.
Does Saori have a special bond with her prosthesis?
Rather, her attachment is to her stump, which she affectionately calls her "cutie"!
Why did you want to share your story?
I simply want to reassure other parents in the same situation that anything is possible, and that there's no need to worry. Prosthetists, but also a number of other professionals, are there to help us. At first, like any parent, I was very scared because I found myself suddenly confronted with disability, without anyone to guide me. But in the end, I realized that we were well surrounded. In fact, we have an excellent prosthetist who Saori adores.
Do you feel you were well supported from the outset?
Not from the start. We were completely lost, with a 50-page MDPH file to fill in and no one to help us. We had to manage on our own. That's why today I'm keen to help other parents in the same situation.
Do you regularly talk to other parents?
Yes, I've set up an Instagram account for Saori, and many parents have contacted me with questions about their children.
Before Saori was born, I was in contact with a mother whose 2-year-old child had the same malformation, and it was very reassuring to talk to her. I also found a lot of support through the association Assedeaassociation, where I was able to talk to other parents. Now it's my turn to help.
What questions do parents usually ask?
They ask, for example, if the children are able to do all the activities like other children, if they feel any pain after the operation... I have also given some contacts or helped some mothers with their administrative formalities.
Is Saori able to perform any activity as a child without a prosthesis?
Yes, she can do almost anything, even more than I can imagine. I let her explore on her own. She rides her bike, scooter, toboggan, goes swimming...
How would you define his personality?
She has a very strong character, probably linked to her history. She doesn't let herself be pushed around, and she's very outgoing. Apart from that, she's a little girl who never cries, who smiles all the time, ever since she was a child.
Do you sense a certain strength in her?
Yes, it's very palpable.
What is your opinion on the perception of disability in our society?
I think the approach is more benevolent than it used to be. Recently, I saw campaigns for a major ready-to-wear brand featuring children with agenesia of the arms. I think that's great. Saori also took part in an exhibition with photographer Francesca Clayton, on the theme of disability. Large-format photos of her can be seen in several cities. I try to promote everything to do with disability, whether through interviews, photos... to raise public awareness.