"Arya helps us more than we help her" - Testimonial from her mom, Marina

U-Exist: Hello Marina. Can you tell us about your daughter Arya?

Marina: Arya's pathology was detected during a check-up ultrasound during my pregnancy. We had a lot of follow-up afterwards. When she was born, Arya was closely monitored and started wearing her prostheses when she was 9 months old, after the first castings.

UE: What is Arya's pathology?

Marina: Doctors call this a congenital short femur, or femoral hypoplasia according to the specialists. This means that her femur did not grow at the same rate as the other one, creating a difference in leg length.

UE: What was the process like, from the announcement to her wearing her first prosthesis?

Marina: We had many appointments, in several centers, with ultrasounds and morphological follow-ups every two weeks. When she was born, her femur was examined for the first time at three weeks. We had several X-rays over the course of the year. Despite the intensive follow-up, we were not entirely satisfied, as it seemed to us that the surgeon had missed several important aspects. As far as the prosthesis was concerned, the prosthetist informed us very well right away. 

UE: How did you discover U-Exist?

Marina: It was thanks to Arya's first prosthetist, who immediately showed us the U-Exist catalog on the website. At first, we used to choose for Arya when she was very young, but now she chooses her designs from a selection we suggest.

UE: How does she react each time she discovers her new prosthesis?

Marina: For her, it's become as natural as choosing shoes or an accessory. Just a few days ago, we saw her new prosthesis with new patterns, and she was very happy with it. Choosing her prosthesis, fitting it and casting it has become routine for her. We're just as delighted to see that she's happy.

UE: What's life like at school and with your classmates?

Marina: At school, Arya has an AESH who helps her with motor skills, gymnastics, sports and dressing. Things are going really well, the teacher and the AESH are great, and her classmates are very supportive. Arya has adapted very well, riding her bike in the playground and not being left out.

UE: Does Arya have a special bond with her prosthesis?

Marina: She doesn't hide it at all, and almost always wears dresses. The children at school already knew about Arya's prosthesis thanks to her older brother. There's no shortage of questions, but we explain to the children and everything goes smoothly. They're all very caring.

EU: Does Arya's prosthesis provoke reactions outside the school?

Marina: Yes, some people think she's injured herself and is wearing a splint or a cast. A lot of people are surprised to see prostheses with patterns and ask questions. I prefer this to the insistent stares from adults, which often happen. Children ask questions simply, without judgment.

UE: Do you feel you were well supported from the outset?

Marina: Yes, but it became more complicated when Arya started to feel pain in her leg. We're in the process of having tests carried out to diagnose other pathologies she's showing symptoms of, and unfortunately we've had to fight to get all the necessary tests. The treatment has not lived up to our expectations. Doctors don't know much about this rare disease, and we still don't have any answers or adequate follow-up.

EU: Do you have the support of other parents in the same situation?

Marina: Yes, recently, thanks to a TV report, I contacted the mother of a little boy operated on for the same disease. She was very helpful and gave me the name of the surgeon who operated on her son. Social networks are also very useful for mutual support.

UE: Can Arya perform all the activities of a child without a prosthesis?

Marina: Yes, she adapts remarkably well. The hardest part is riding a bike, because her knee is higher than the other, which makes pedaling more difficult. But she goes on the trampoline and participates in all the activities. She's careful and stops earlier if she feels pain, but she's adaptable and does everything like the other children.

EU: What is your opinion on the level of inclusion at school?

Marina: There's another little girl in her class with a prosthetic leg, which helps Arya identify. They help each other, and it shows the other children that Arya is not an isolated case. However, it's still common to want to hide disability or pretend it doesn't exist. We must continue to evolve, accept differences and allow everyone to live together.

EU: Do you think we're moving in the right direction?

Marina: Yes, thanks in part to social networks in my opinion. But there's still work to be done, especially with adults, because children are quite aware at school, at least in my experience. The most shocking thing is the insistent stares from adults. Children ask questions without hesitation, and we're happy to answer them. 

EU: How would you define Arya's personality?

Marina: Arya is a very feisty and radiant little girl. She's always smiling, whether at appointments or anywhere else. She helps us more than we help her. She also has a strong character, which I think will serve her well in the future. She really impresses us, never complains and finds her situation normal because she was born with this condition.

UE: Why did you want to share your story?

Marina: Arya's disease is rare and not many people talk about it. I think this can help other people who are unfamiliar with the condition. I also think that U-Exist's work is fantastic and deserves to be better known. And if I can get feedback from professionals or other parents, that's even better. 

EU: Do you think everything would have been different without the possibility of customizing Arya's prosthesis?

Marina: I don't know if it would have been much different, because she got used to it from the start. I also don't know if we would have been more inclined to hide her prosthesis if she hadn't had a reason. But it's clear that this has an effect on morale, and choosing a prosthesis is a bit like making a list for Santa Claus for her. But it's true that if Arya's first prosthetist hadn't offered us this option, we probably wouldn't have thought of it.

EU: Do you have any advice for parents in the same situation?

Marina: Don't give up, talk about your situation, even to professionals. There's no shame in asking for several opinions and consulting other specialists. You have to listen to your instincts and not accept the first opinion without questioning if you feel the need. 

EU: Trusting your child too?

Marina: Exactly, listen to your child and trust him. It's really the child who will guide us, show us what he's feeling and what he needs. We mustn't be afraid to let them be free.