For three and a half years, Matteo’s parents ran in circles. Then came the shocking diagnosis. The dedicated pharmacist couple wants to prevent other families from taking up the gauntlet in this way.
When Matteo was born in May 2018, the doctors said everything was fine with the boy. Even when numerous infections took him to the hospital in his first year of life, the parents were told not to worry. And even when the boy didn’t start walking until 28 months, it was said, “He’s just getting later.” But David and Caroline C. have known for a long time that something is wrong with their son. But what?
Only two registered cases of illness in Austria
It started a gauntlet for countless doctors. In August 2021, three and a half years after Matteo’s birth, they were given the shocking diagnosis at MedUni Vienna’s Genetics Institute. The four-year-old is one of only two children in Austria to suffer from the rare genetic defect MECP2. Worldwide, 215 cases have been registered of the disease, which resembles Rett syndrome but mainly affects boys.
Matteo can speak words and walk. But does it stop there?
“A protein in the brain that controls other proteins occurs twice in Matteo. That affects both his mental and physical development,” says his mother Caroline when meeting the “Krone” in a Viennese park. “He doesn’t understand or feel everything, can only speak a few words,” she says.
“But the most terrifying thing is the prognosis for our child. Because 50 percent of those affected have seizures when they are in primary school and then gradually develop the skills they have acquired,” explains the Paris chemist. Only half of those affected live to see their 25th birthday.
Family left alone with diagnosis
“We don’t want to imagine that at all,” says Matteo’s father, who also has a senior position as a chemist in Vienna. What worries the 40-year-old is how families face such poor diagnoses: “As scientists, we understand to some extent what the doctors are telling us. But how are others supposed to feel when all the complicated technical terms descend on them untranslated?”
Parents are committed to system improvements
The parents, who are now well connected internationally, are fighting for system improvements. Not just for their son, but for all affected families: “Parents need better support, such as psychological support. But also help with rehabilitation, daycare centers and much more.”
Matteo attended one of the rare kindergartens for severely disabled children in Vienna and attends the Karl Schubert School in Liesing. “There are 40 children on the waiting list. Here too, urgent action is needed,” the couple is also committed to ensuring that parents of children with disabilities do not have to give up their jobs because of a shortage of childcare places. And thus got caught up in a spiral of poverty.
Strongly noticeable connection with the six-year-old sister
It’s admirable how family C. controls their lives! And finds the best expression in her son’s happy eyes. When he meets the “crown”, he continues to smile and point to his toys and shout “boat”. The connection with his six-year-old sister Nyssa is also noticeable. Mama Caroline smiles when she talks about the two: “Nyssa is incredibly nice to Matteo and cares about him. We have the impression that sometimes she understands what he needs better than we do.”
untilSupport with activities with the children at Matteo’s school:
Karl Schubert School Association
IBAN: AT83 1100 0006 6197 9500
BIC: BKAUATWW
Source: Krone
I am Ida Scott, a journalist and content author with a passion for uncovering the truth. I have been writing professionally for Today Times Live since 2020 and specialize in political news. My career began when I was just 17; I had already developed a knack for research and an eye for detail which made me stand out from my peers.
