The story of Cătălin – a high school student whose disease confines him to a wheelchair
but his family and school give him wings
Cătălin is a 17-year-old teenager suffering from Duchenne muscular dystrophy, a genetic disorder characterised by progressive muscle wasting. Despite the rapid progression of the disease, Cătălin has managed to get to high school, supported and encouraged not only by his family but also by his teachers and classmates.
Duchenne muscular dystrophy is the most frequent type of muscular dystrophy, caused by the deficiency of a protein called dystrophin which is needed for muscles to function properly. The disease affects boys exclusively, with an incidence of 1: 3,500. Since there is no treatment that can stop the progression of this disease, by age 12, most of those affected by it end up in a wheelchair.
Cătălin walked on his own two feet until he was nine and a half years old. As a small child, he managed this quite well, but – as time went by – it got increasingly harder for him to use his muscles. Diagnosed early, the doctors monitoring his condition told him that one day he would no longer be able to walk and he would become dependent on a wheelchair. To buy as much time they could, his parents did everything in their power: from following conventional and alternative treatment regimens closely to taking him to spas and rehabilitation centres. But the disease pursued its course relentlessly and, in third grade, Cătălin could no longer use his legs.
Over time, his upper limb muscles also weakened, his sight deteriorated and he eventually developed lung and heart problems – which are all common to this disorder that progressively weakens the entire muscle mass.
“Without the school’s support, I would have had to take him out of class”
When he could not move around without a wheelchair anymore, in third grade, the family needed support from the school. They didn’t hesitate to ask for it and they got it. All his classes had to be conducted on the ground floor, an access ramp had to be built in school and an accessible toilet had to be set up. The parents got everything they asked for. And, besides all that help, the moral support given by classmates, their families and teachers made a great difference. “Never have I imagined that they will support me so much”, says Ana, the boy’s mother.
In primary school, when Cătălin was not in a wheelchair yet but he was having difficulties walking, the school teacher explained his condition to the other children and taught them how to help him out. “He was fortunate and lucky enough to know half of his classmates from kindergarten, so it was very easy for him to fit in. The children stood by him and he didn’t feel anything unusual. When someone picked on him, they would all jump to his defence, so he didn’t feel that he had that disease and that he was marginalised”, tells the mother.
“I couldn’t bear for him to face another shock at school as well”
When he started lower secondary school, he enjoyed the full support of his class teacher and the other teachers. If things had been different and the boy hadn’t felt comfortable at school, his family would have probably withdrawn him from mainstream education. The disease was already way too agonising for him and any school troubles would have been impossible to handle. “We are lucky to have a very kind class teacher who encourages children to socialise with him and he feels good in that environment; he is not traumatised. Some people we met at the centre where he does rehabilitative therapy had to face quite different attitudes in school, which traumatised their children forever. I prayed that it wouldn’t happen to him because I would have had to withdraw him. I couldn’t bear for him to face yet another shock”, says Ana.
A devoted mother, admired by the parents of Cătălin’s classmates
The family’s dedication and strive to send the boy to school in spite of his health problems made a great impression on the teachers and parents from the district school that Cătălin attended until eighth grade.
“I first noticed, many years ago, this mother who always accompanied her child to school and stood out from the crowd. At first, he had an adapted device that helped him walk and later he started coming in a wheelchair. He never missed one class and the mother’s desire to always be with her child in school impressed me. If we offered to help her with the wheelchair, she would decline and say she could handle it herself. And she always did. She had a very effective system for moving Cătălin around the school, from the gym to the toilet and anywhere he needed to go. Both the mother’s dedication and the support showed by children and teachers, including the principal, made it possible for Cătălin to fit in and be successful in school”, told us the mother of a boy who went to school with Cătălin.
Cătălin doesn’t want special treatment
The boy is currently in high school, majoring in industrial chemistry at the “Costin Nenițescu” Technical College in Bucharest, in a class of 30 students. He is good friends with most of his colleagues and, just like in lower grades, he is supported by his teachers, who appreciate his calm and respectful way of being. Although based on his diagnosis he is entitled to some accommodations (instructional adaptations and test accommodations), the boy doesn’t want to use them. He adapts to the curriculum and takes all the tests the same way as his colleagues. During the National Examination, although he was allowed to take an extra hour to complete the test, he preferred not to use that opportunity.
With the principal of the school he attended until eighth grade
A very uncertain future
Mainstream schooling and the close relationship with the teachers and classmates have been like a breath of fresh air for Cătălin and his family. His disease, with no cure yet, is rapidly progressing despite all the conventional and alternative therapies he tried and all the desperate efforts to slow it down. That is why his mother says she cannot think of educational plans for Cătălin beyond high school just yet. Her only hope is that they will discover a miracle cure to end her son’s suffering.
“For the moment, I can’t imagine his future. I just pray to God for a miracle. I pray that they find a cure for him… We can’t make plans for his education beyond high school. Each year, our only plan is to be healthy”, says Ana.
This article was written by www.totuldespremame.ro with the support of UNICEF.