Matteo – Born May 2012 in Tuscany, Italy – STXBP1 genetic syndrome
Matteo Ferrandi was born in May 2012 in Italy, to a loving family, with two older sisters.
Some days later, tests revealed that he had STXBP1 syndrome.
In his first year, his parents said, “Matteo started having epileptic seizures – a phenomenon related to the genetic disorder. Doctors recommended medications, but although the seizures became fewer, Matteo’s developmental ability was adversely affected. When he was eighteen months old, we decided to stop giving him the drugs, and started 50-minute physiotherapy sessions, twice a week. Matteo now began raising his head slightly and turning over, although at a very slow pace”.
Within that period there was no significant developmental progress. At age three, Matteo started kindergarten. Shortly afterwards, he caught severe pneumonia, which caused regression in his development; he did not even have facial expressions. He was connected to oxygen, and underwent rehab for a year, with frequent hospital stays, and had physiotherapy and logotherapy sessions. The parents recall that “Throughout all the therapy, Matteo remained totally passive. The food question was very frustrating, he had to have lots of food supplements, and we were starting to consider installing a feeding tube. And then, when Matteo was five, we heard about First Step!”
In July 2017, after contacting the First-Step Centre in Tel Aviv, Shai Silberbusch assessed him in Tuscany, and managed to stimulate Matteo and receive from him senso-motoric reactions he had never previously given.
Following that positive encounter, Elisa – a First Step instructor, came to their home in Italy, and we launched the first process, working intensively six hours every day, over a week. During that first process, the family learned that in order to gain therapeutic results such as eating independently and achieving longer eye-contact, they could make demands of Matteo, they could challenge him, allow him to be frustrated for the sake of learning. Now they knew he could express himself aloud, he could communicate, and knew how to be happy, angry, and frustrated too.
At First Step we gained therapeutic experience with a child from Switzerland who was born with exactly the same rare genetic STXBP1 syndrome, and we were able to draw on that experience.
In the first process, Matteo already learned to eat unassisted, – and not only mashed food like a baby’s. He learned that he had teeth, and could chew. “Today,” his mother says, “we put a plate of food in front of him and he eats everything like the rest of the family, he uses both hands, it’s terrific. It’s hard to believe that not so long ago we were thinking about a feeding tube”.
The family learned that Matteo didn’t have to sit in a supported chair, and could also be on the floor and the sofa unheld. He could spend time in the swimming pool and go into the sea. In fact he could do much more, and eat and drink everything independently.
The change that the entire family underwent led in turn to a change in Matteo. Until then, he’d been treated as disabled and handicapped, while now they saw there were other options. As his Mama remarked: “The first process opened up a world. Together with First Step came the demand that Matteo starts to act”.
The family continued with more processes in Italy. Now he could lean on his extended arms, on his elbows, and push with his palms. For the first time, Matteo was able to sit independently without flopping. In January 2018, the Ferrandi family came to Tel Aviv for another process. This time, our objective was to improve Matteo’s communication and eye-hand coordination, improve functionality of his hands, holding the head, and sitting for a long period.
Matteo’s mama says, “Our thinking is different, we realise there are no limitations, that everything is possible. Matteo has learned to adapt to sensory changes, to the cold, the heat, to the touch of water… The work with First Step is holistic and encompassing. It’s a whole new world – we know that our boy is able to learn and cope with the environmental demands. In fact, he’s not just a handicapped child”.
“We’re so grateful to the family who introduced us to First Step. And we’re looking forward to further processes that will advance Matteo. The only thing we regret is that we didn’t know about you before”.
Watch the video that presents some of the work we do with Matteo