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Luca’s Story 

Born: 2015 / Age: 8

Country: Germany

Journey to diagnosis

After 38 weeks of an uncomplicated pregnancy, Luca was born healthy. He was 53 cm and weighed 3200 grams. Luca developed normally and reached the milestones of crawling, sitting, and walking within the expected timeframes. He said his first word when he was 9 months old.


Luca was always happy and active, and we didn't have any concerns until after the age of 2 years when he started kindergarten. Compared to his same-aged peers, Luca spoke few words and he liked to play alone. The teachers recommended speech therapy.


What's your favorite animal and why?

“I love my dog Maxi because it is so sweet and funny.”  


What is your favorite holiday and why? 

“I love the summer to go with my family at the seaside because I love to play in the water and sand..”   

Luca started speech therapy, occupational therapy, and later, ergotherapy.

As a family, we thought that Luca might just be a late talker, and we hoped that he would advance his language skills and start speaking more soon. 

However, at 5 years old, Luca was diagnosed with the CUL3 genetic disorder. He was also diagnosed with a speech delay, mild intellectual disability, and hyperactivity. We expect to do more investigations this year.


Reflections & hopes for the future


Overall, Luca is a very happy, funny, and empathic child. He loves to go to school and has made new friends. 

We hope that Luca will continue to grow and attain the ability to lead an independent life. Our hopes are for him to have his own career and start a family of his own one day. 

Last updated 2023

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