Isaac, who lives in Troine with his mother Vanessa, his sister Naomi, and his aunt Karin, has multiple epiphyseal dysplasia – a rare disease that affects his joints and limits his mobility.
“I have a problem that affects my whole body, especially my joints,” he explains.
Diagnosed less than a year ago, Isaac is currently struggling most with pain in his hip and back. His mother, Vanessa, admits that there’s still much they don’t know about his condition. He receives treatment at the children’s clinic and a specialised centre in Paris, but the biggest challenge ahead is a hip replacement. Because he’s still growing, doctors say he will have to wait another three to four years for the procedure. Until then, his family worries that his condition might worsen to the point where he can no longer walk.
Isaac loves being around his friends, but not being able to join them in games is tough.
“I sometimes feel normal, and sometimes sad,” he admits.
Still, he finds joy in watching them play and laughing with them. At school and Maison Relais, he gets a lot of support. “Not everyone understands what I have,” he says. The older kids know he can’t do everything, but younger ones sometimes don’t realise why he can’t join in.
His teacher is always there when he needs help, and being around his classmates is his favourite part of school. While he enjoys music and Luxembourgish the most, his strongest subjects are maths and French.
Vanessa recalls that when Isaac was born, nothing seemed unusual apart from his two little fingers, which were smaller than normal. The paediatrician wasn’t overly concerned at first. But when Isaac was 2.5 years old, he underwent his first surgery on his hands.
By age four, things took a more serious turn. During a family holiday, he suddenly couldn’t walk. Doctors discovered dysplasia in his knee, and an orthosis helped him walk again – until last January, when he lost mobility completely. He had to use a wheelchair and underwent two hip surgeries. From October to December, he and his mother stayed in a rehabilitation centre.
Now the family is back home and trying to regain a sense of normality. Isaac’s sister, Naomi, is in high school in Wiltz, and he is happy to have a big sister. Isaac goes to school and Maison Relais, and regularly sees a physiotherapist. His mother, a single parent, works full-time, balancing the demands of her job with caring for him. She is grateful for the support of her sister, Karin.
“The energy comes from being in a good mood and thinking positively,” says Vanessa. “It’s already complicated to deal with. You always think it only happens to other people, and then suddenly it’s your reality. But it just doesn’t do us any good to complain. If Isaac handles it with such strength, that gives us energy too.”
Despite the challenges, Isaac remains hopeful. He makes videos on Instagram to raise awareness about his illness. His biggest dream? A “like” from football superstar Cristiano Ronaldo.
A passionate football fan, he supports Portuguese club Benfica and loves playing on his Nintendo Switch. But what he really wants is to play football again.
Vanessa shares the same wish as any mother: “I just want him to have a normal life, especially as an adult.”
Video report in Luxembourgish:
