Leo is 4 years old and was diagnosed with Syngap1 in 2021 just before Easter. We waited 6 months for a diagnosis. Our journey towards a diagnosis started when Leo started swimming lessons. While the other children swan and played, he relaxed and fell asleep as soon as entered the water. The instructor recommended physiotherapy and occupational therapy which continued for 3 years. Leo is about to finish his first year a special education school. He loves to be with other people, loves his little brother Denver and little sister Elodie.
Leo loves books, traveling the world with his family and swimming in the pool, sea or lake. Our salvation were the mothers of the "syngap1 italia" group known after the diagnosis and who inspired my husband and I to create an association for Leo in Switzerland where we live. There are hard moments, difficult days, many tears but many amazing moments. Leo finally started walking two months ago even though he is still non-verbal, he sends kisses and makes the heart sign with his hand to everyone!
We know that the road is still long, but we also know that together it will be easier to reach the moon.
We can use your help to raise awareness about SynGAP1.