Confined to a wheelchair, Nicolas dreams of being able to fly one day
Diagnosed with spinal muscular atrophy when he was eight months old, the little boy that doctors didn’t think would survive is now a straight-A student fighting for a better life.
A child with long-lashed green eyes dashes to the gate. He is in a wheelchair operated by a few buttons. Behind him, a little dog bounces all happy.
The boy smiles and talks on and on about his likes: math, animals, Chinese culture, music, painting. He says he gets straight A’s in school and that he is top of his class. “We are stunned by how smart he is”, says the mother, reinforcing the boy’s words.
Nicolas is a fourth-grade student at a school in the commune of Mărgineni, Bacău County. Because of his disease, his mother is always with him: she takes him to school, to therapy, to symptom-relieving activities. The boy cannot stand up, he has no strength in his arms and he can barely use his slightly crooked small hands that clumsily grab the report card.
Nicolas’ spinal muscular atrophy is a degenerative disease that causes muscle weakness and wasting. This affects walking, swallowing and breathing. He sometimes stops breathing for a few seconds in his sleep.
A score of 10 at birth
Nicolas is the family’s firstborn. A wanted and eagerly awaited child, he had a score of 10 at birth and everything went well until he was about eight months old.
“I noticed a change, a tremor in his little hands and drooping eyelids. And that’s when the nightmare started”, recalls Marinica, with tears in her eyes – a woman determined to do everything for her son.
The cruel diagnosis came when the boy was 16 months old and the parents were told that he would never walk. “Initially, he was not expected to live pass the age of three”, tells the mother.
Eager to give him a good life, Nicolas’ family took him to different hospitals and care centers where he had kinesiotherapy, electrotherapy, aquatic therapy and physical therapy. He also started treatment with spinal injections to relieve symptoms. For that, Nicolas’ father takes him to Bucharest every four months.
His parents even tried the stem cell transplant, a surgery that Nicolas underwent in Thailand at the age of five, with tremendous effort from his family.
“That stopped the disease and even led to progress”, explains the mother.
Help for Nicolas
While this is a disease that has no cure yet, tools are available for keeping symptoms under control: supportive therapy, breathing aid devices, orthopedic shoes and wheelchairs.
Doctors have recommended Nicolas a lot of therapy, spinal braces, leg orthoses (which need to be replaced yearly as he grows), arm and hand orthoses, a respirator and a new wheelchair because “the battery lasts for two hours tops, which is very little, and it takes three to four hours to charge”.
As he cannot move around without his wheelchair or one of his parents, Nicolas spends a lot of time indoors and in the yard, playing or studying. He has a passion for reptiles and tarantulas, superhero movies, chess and technology.
What a pleasure to listen to Nicolas talking about the future!
“Trust me! You will watch this story in two-three years and you will remember that I said that the procedure to move your brain in a different body will be invented!”
Like any child, Nicolas has beautiful dreams. But his biggest wish is to be able to walk. For this, his family needs “a wallet that produces money”.
Hoping for a better future
For a 10-year-old, Nicolas shows extraordinary insight. He sees the shortcomings of the world around him and understands more than he lets on. People’s indifference sometimes makes him feel sad and outraged and seeing filth on the streets makes him angry.
You can ask Nicolas almost anything – he will gladly advance theories and come up with elaborate answers. But he doesn’t like to talk about his disease or how he feels. When he is specifically asked about these things, he answers quite frankly that he doesn’t like number 8 because his disease started when he was eight months old.
He says that him not being able to walk is his biggest misfortune.
Still, Nicolas is happy. He is lucky to have a family that supports and loves him unconditionally. He recently got a little sister, Sara, who brings even more joy to the family.
Together, the four of them continue to live a simple and discreet life, surrounded by love and with faith in God.
A high achiever at school and the winner of many local and national competitions, Nicolas has the strength to dream of a better future. He wants to become an IT expert. Until then, the road ahead is long and exhausting. The child needs to undergo costly therapies and needs orthoses and a new wheelchair. Each and everyone of us can contribute, to support Nicolas’s dreams come true.
The progress Nicolas and other children like him make depends on the equipment, treatment and health services to which they have access. Just like him and his parents, many vulnerable families are fighting for their children’s future.
And they are not alone. As part of UNICEF’s “Community-Based Services for Children” project, community teams made up of social workers, community health nurses and school counselors offer children from vulnerable families support and access to the health, social and educational services they need.
You too can help. Text now CHILD to 8864 and donate EUR 4 every month. Help Nicolas and other children like him get access to the services they need. Thank you!