Alexandra is a 23 years old young woman with deafblindness.

She was born prematurely at 7 months, and that's when her fightbegan. 

"They placed her in my arms and told me: your child will not hear, will not walk, will not speak, will have paralysis either in one hand or on one leg. I was scared! Then I told myself that my daughter has to be strong. I brought her home and put her on the bed; I was even afraid to lift her up. It was very difficult in the beginning!", her mother recalls.

Later on, her mother noticed that the baby didn't make many sounds, so she decided to take her for a thorough examination. This was followed by many therapies and treatments. 

"It was very difficult in the beginning, until she grew a bit, but we got through it. Little by little, day by day. With check-ups, visits, massage, physiotherapy, injections, and she kept progressing", her mother adds.

At the age of 4, Alexandra said "mom" for the first time, and at 6,she took her first steps. Little by little, Alexandra became more independent, and now she communicates verbally.

The group helps me communicate better

Alexandra learned about Sense International Romania (SIR) when she was a pupil, at school. She was curious to know more and joined the group of young people with deafblindness that the organization works with. "I was very curious to see how things work there. I spent days with friends who have deafblindness, and it was very interesting", she remembers.

She participated in several trips organized by SIR and has fond memories from the mountains or from the seaside, where she rode the cable car and met other young people with deafblindness, just like her, from various cities in the country. 

"The group helps me to be more open, and communicate better," Alexandra says.

We have to move forward!

Her mother was also happy when she found out what deafblindness exactly meant and that she could meet other children and parents going through similar situations. 

"I was happy when I learned about deafblindness; I realized that there are other children like her. I wanted to meet them; I thought maybe they would become friends with my child! I wanted to share with them what I had learned and to have the opportunity to communicate with them", Alexandra's mother emphasizes.

It has been a long journey for the two of them, mother and daughter, and it continues with new challenges. For the past few months, Alexandra has been working full-time at the same factory as her mother. Working eight hours a day in three different shifts is tiring for her, but she enjoys it and is proud that she can do it. She now wants to save money for driving school and, if possible, even have a car. 

Her mother would like to encourage other parents with similar stories: "They should start somewhere, even if it's difficult! We have to move forward, leave the difficulties behind a bit for them! We can't leave them behind! You can be anyone, you deserve to be helped!"

Story written by Cristina Botezatu

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"My name is Crina, I am 39 years old and I am from Cluj, a city in Western Romania". Crina smiles and shows us the sign she has chosen for her name: her freckles. 

Crina communicates only through signs, she was born deaf and wears glasses. She grew up in a united family, with both parents being deaf, brothers and sisters who can hear and another sister like her, with deafblindness.

For a long time, she didn’t consider herself a person with deafblindness, only deaf. She learned the secrets of tailoring in highschool, then worked in a tailor shop for 9 years. After that, she took on another job in a supermarket, where she arranged merchandise on shelves, all experiences from which she learned a lot. 

Her mother, Elena, told her about deafblindness for the first time. 

“In 2006-2007, my mother went to Finland, where she had a friend. She attended activities with a group of people with deafblindness. She liked it there and discovered new things. When she returned home to Romania, she wanted to find out more about deafblindness and learned about the Sense International Romania. She was impressed", Crina recalls.

Her mother became a volunteer for SIR, getting involved in many activities and representing the parents of children with deafblindness. A curious nature, Crina accompanied her to meetings, met new people, and gained a better understanding of what deafblindness meant.

"That's how I discovered that I am also a person with deafblindness, and that's ok," says Crina smiling. 

Her mother taught her sign language, and this way they were able to communicate very well.

"She was very interested in being close to people. We used to communicate both hand on hand and through signs. Even though she didn’t see well, she always said it was possible. I felt a very important connection with her through communication. Even when it was dark, we could communicate”, adds the young woman. 

From her mother, she inherited a passion for communication, as well as gentleness and patience, which she now applies in her activities with young people and children with deafblindness in SIR's projects.

From participant, to employee

In the spring of 2022, Crina accepted the opportunity to join the foundation's team and continue her mother's work, who is no longer with us. "It was wonderful to meet new people, to feel connected, to feel love. I accepted to work at SIR not necessarily for myself but for those around me", says Crina.

She now coordinates the group of young people with deafblindness, together with another colleague who is also deafblind. She keeps in touch with the members of the group, facilitates the online meetings and explains through signs for those who don’t communicate verbally.

She also attended several trips with the group of young people with deafblindness. Initially, she felt uncomfortable speaking in front of them, but now she likes to share her experiences with the others.

"It’s good to not hide but to show what it means to be a person with deafblindness, what one can do, what talents we have, the fact that we are equal to other people, that we can do various activities. I hope the foundation will develop in the future", says Crina.

During activities with the young people with deafblindness in the group, she noticed that some individuals understand more easily, while for others it’s more difficult. In time she learned to adapt to each individual.

"If someone is new, I tell them that deafblindness is a hearing and vision impairment: poor vision, poor hearing. Some are deaf, wear hearing aids, wear glasses; there are several categories of deafblindness, I give them examples. Some people don't accept it; they only feel deaf, and you can't force them. I have patience and explain," summarizes Crina the way she talks about deafblindness.

Among all the activities she has participated in, she particularly enjoys face-to-face meetings, where people communicate and smile more. 

"They inspire each other with light, trust their friends, and influence each other. In light, there must also be understanding and gentleness", says Crina, recalling the gentleness she learned from her mother, who still guides her.

“We go all the way”

For the future, she desires more activities and better communication. 

As a person with deafblindness, Crina feels she can do whatever she wants. She enjoys traveling, discovering new cultures, and trying food from different cuisines. She can travel by train or airplane, and does her research before embarking on a new adventure: she searches for the itinerary on her phone, gathers information about the hotel where she will stay, reads comments and reviews from other travelers. This summer, she will go on a trip to Greece with her father and younger sister, together with a large group of deaf people. 

In the future, she dreams of more distant destinations, such as Africa or Asia, but until then, she believes there are still things to be done within the group of young people with deafblindness.

"I want to continue working, to develop projects as part of the team. I don't want to think that it's enough as it is, NO! We go all the way... even though I don't know where this end is!"

Story written by Cristina Botezatu

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