Lio's Story

10 months old | Noonan Syndrome | Germany

“If we hadn’t had [Fortini*], our Lio would have simply drank too little food and therefore had too few calories. Since he started getting [Fortini], he’s been doing well in terms of weight!”

– Katrin, Lio’s mom

*Fortini is known as Infatrini outside the U.S.

Lio, from Germany, was born with a mild form of Noonan syndrome, a genetic disorder with symptoms that include heart defects, bleeding problems, developmental delays and short stature. For Lio, the syndrome led to a pronounced failure to thrive.

Instead of joy, the first months of Lio’s life were marked by tears and sleepless nights, his mother recalls. With symptoms that included high fever, rapid pulse, and poor blood flow to his hands and feet, he remained hospitalized after his birth and had to be closely monitored. His weight was below the 3rd percentile. Concentrating infant formulas didn’t help. Lio couldn’t keep the mixture down and continued to lose weight, instead of gaining.

“I cried a lot and I could not sleep,” says his mother. “It was this inner tension of not knowing what’s going on. What does the scale show today?” The tension finally began to ease when Lio was introduced to Fortini at the age of 3 months. After a short adjustment period, he quickly began to gain weight – 2 pounds in the first 4 weeks! Soon, he was healthy enough to go home for the first time.


“I was overjoyed that something finally helped us,” says his mother.

Once home, he continued with a combination of tube and oral feeding of Fortini. And he continued to grow. “Finally, there was a small bundle of life” says his mother. “I’m so incredibly proud of him. An incredibly huge weight was lifted off my chest, and I know now he will have a wonderful childhood and lead a great and happy life!”

Now 10 months old, Lio continues to use Fortini as his sole source of nutrition and is continuing to thrive.


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