I learned the meaning of Colours

Brisilda’s infancy was like no one in her family. She was a lovely, smiley, beautiful child. When she was two, however, she got sick and had a high fever. Her mother thought the illness went away with no long-term side effects as Brisilda did not cry or complain about any pain.

It wasn’t until she turned six, did her mother notice that something was going wrong to her daughter’s body. She was not growing normally. Her bones were growing more and more over time. After a health visit in the hospital in Tirana, the capital of Albania, Brisilda’s mother learned the tragic truth--her daughter had backbone warping.

Today Brisilda is 12. She is the second of three children of the Zeneli family, with two lovely sisters, Anxhela, 9, and Manushaqe, 8.  She and her family have been coping with her fragile health for the last six years.

Thankfully, the three children are registered in World Vision’s Sponsorship Programme and regularly participate in and benefit from World Vision’s Programmes.

Although the family lives in Vehçan village, a picturesque place geographically positioned on the top of a hill where the air is clean and fresh and flowers bloom in the spring time. The external image of beauty and tranquillity, however, are just a façade, hiding the pain and problems this and other families struggle with.

It turns out that Brisilda is not the only sick member of the family. Her two young sisters are also not well. Anxhela suffers from epilepsy and Manushaqe has difficulty seeing. As if that were not enough, the children’s father, Shaqir, is also sick. These past four years of dealing with increasing health problems among his daughters, among other concerns, have driven him to drink, damaging his liver. Today, he must take many medicines. This places the bulk of the burden of caring and providing for the family on Fiqërete’s shoulders.   

“Where I visit my daughter in [the hospital in] Tirana and they told me, ‘Brisilda has back-bone complications,’ I fainted…I still blame myself for learning the truth so late,” said Fiqërete. “I do not know what was caused this tragedy. I did not see anything going wrong with her health before she was 6. I do wish the nurse would have visited Brisilda during that time and would have told me what was going on with her health. Maybe then Brisilda would be very normal today,” she added.

Since the moment doctors diagnosed Brisilda’s back bone warping, Brisilda has regularly worn a corset that helps keep her spine in the right position and provides the body a sense of balance. While the corset does help in some areas, it is also a big obstacle, preventing her from fast movement, bending down, or holding a school bag—she is very small for her age, looking more like an 8-year-old than the 12-year-old she is. And, it will also most likely prevent her from earning any wages. 

“During physical education time [at school] my classmates can easily do every exercise the teacher wants us to do, but I can’t do them. I feel so bad am not like them,” said Brisilda.

“My biggest desire is to be a great singer and run, feeling the fresh wind in my face. What a wonderful feeling it would be if I would be able to run!”“I like to read books and go to the sea too,” she added. “I like its waves and the tides. When he visited, the doctor had said that sea water is very curative for my body situation, but I can’t go because the sea is far from Librazhd and we [my family] don’t have the possibilities to go there” she concluded sadly.

Brisida’s desire to become “a normal child” knows no limits. She has a strong will and a combative spirit, regularly doing exercises at home. “She never gets tired or complains,” her mother says. “My poor child wants her wholeness so much that she does not stop exercising inside and outside the home, even when the weather is sloppy and it is raining. The physiotherapy sessions are too expensive here and I cannot afford them. I have been waiting for so long for someone to come reach down a hand and help me on this. We were lucky to be part of training sections in the past September that World Vision organized.  This was where I learned how to help my daughter in the situation she is in,” says Fiqërete.

Brisilda is an introvert person, but her world is full of ideas and great plans for the future. At the same time, however, her hopes for the future are often overshadowed with a sense of sadness.  Poetry is the only way she expresses her sadness. There are two world that appear in almost every poem she has written, grey and pollution.  

“This is how I used to see my world before I met World Vision and [before] I became part of a training that opened new doors to me,” said Brisilda. “For the first time ever, I experienced a vacation with my mother, a time I have dreamt of so much for so long… I saw the sea for the first time and swam on the water, that magic water that is so curative for me. There, I learned to continue hoping become a “normal child” one day. Now my days are coloured and I still believe one day I will be recovered,” she added, hopeful in the future.

For World Vision in Albania, Brisildas’ case and those of many other children, more than 17,786 children in Albania face similar situations, the past year’s initiative was only the beginning of projects and plans the organization has to provide for the wellbeing of children with special situations in their program areas of Librazhd.

“We are working to identify more children with such difficulties in the area, building the needed staff, specialists and equipment and working together to evaluate their school conditions and then provide a proper environment where they will have the right facilitates and tools to feel at home. As for the difficulties these children face during the physical education class, we are planning to provide the best gym conditions where children [with different abilities] can exercise normally and feel like everyone else,” said Bora Bahiti, World Vision’s Health Development Facilitator, who also said that Brisilda’s sister will be one of the participants in the following program now that they have been able to learn from this pilot programme.

“We are also planning to follow up on the past years steps and continue where we left off, involving as many parents and children, is such circumstances as we can. We will continue to train mothers and children of this category, to bring specialists to equip them with the right knowledge to not be limited by their current barriers,” Bora concluded.

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It has now been a year since Fiqërete participated in the training session. She now feels more prepared to provide the best care possible for her daughter’s health condition. “Before, I used to say, ‘God, why me? Why should I face such suffering?’” she says. “I did not know how to handle my situation. Now, I am stronger in spirit and knowledge to fight against my reality,” she said. 

As for Brisilda her hopes to be a “normal child” have not vanished. It may be that nothing can damage her purity and the beautiful world of this child. She is a very talented girl, especially when it comes to writing poetry. She also paints, sings and is an excellent student. Brisilda’s pictures are hung on the school’s walls as the most beautiful ones. She loves reading books (especially novels).  She often save the little money the mother gives her to by something to eat during the school time to buy her favourite books. Her favourite novel is, “The Rise and fall of buddy Zylo” an Albanian novel written by Dritero Agolli.

Her dream is to become a doctor and heal every sick child in similar circumstances. “I want so much to be a doctor,” she says, “I really dream of this, because I have suffered from disability problems and I think I am able to understand every child in my circumstances. I will tell them to hope like I am doing because who knows, maybe help can come soon,” she says confidently.

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During the month of September, 2012, World Vision in Librazhd Area Development Programme (located in the southeast of Albania) initiated a health initiative. They started by identifying seventeen children with different abilities of the target area and aimed to help them learn good practices on how to improve their health situations and forget their pain through entertainment.

World Vision staff partnered with specialists (psychologists and physiotherapists) to host four specific training sections (in Sipille seaside- Durres city, west Albania) for parents, teaching them practical methods on how to act in different circumstances that result when having a child with disabilities in the home. Parents were taught how to help their children psychologically face their problems and how to give them the courage and support needed for kids to reach their potential, even at home—showing them exercises they can do with their children and excercises their children can do on their own.

Eight children with their mothers and, in some cases even their fathers, benefited through this initiative, learning things they have never heard about before. In addition to basic assistance the parents learned how to become advocates for their children, especially when they show special skills, such as painting, singing and dancing, etc. 

One of the children has drawing and singing talents that are far beyond the others. Her nobleness and intelligence lit up the days of training. For her, it was the first outdoor experience of her life and possibly the first time she ever saw the sea.

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