Meet Nico

Nico was born on February 15, 2019; he came out with the umbilical cord double wrapped around his neck. Nico was quickly rushed away to the NICU where he spent the first 18 hours of his life. Nico came into the world fighting and has not stopped!

When Nico was 2 months old, he was diagnosed with low muscle tone, Nico could not lift his head and move independently. Nico was later diagnosed with torticollis from not being able to move his head. He was also diagnosed with plagiocephaly; because of this he wore a helmet for about a year and a half. As Nico grew, we saw that he was not meeting the milestones he should have been for his age. At one and a half years old Nico was diagnosed with congenital muscular dystrophy with mutations in the lama 2 gene. Nico has a daily routine of stretches and the use of medical devices to help strengthen him.

Nico will be turning four years old this February (2023). He has had 4 hospital stays of three days or longer in his short life. Nico has a hard time fighting off illness when it comes due to his lack of strength in coughing. We have to be very careful anytime Nico gets sick. Over the past 6 months Nico has developed contractures in his hips, knees, ankles and fingers. This makes it more difficult for Nico to move normally.

Nico has had many tests and procedures done in his short life. However, Nico has a smile that lights up the room. He is funny, smart and caring. Nico loves adventure and exploring the world around him. At home Nico has many pets including ducks that he loves. Nico absolutely loves any kind of vehicle from emergency vehicles, Contruction vehicles and monster trucks. Although Nico has different strengths than other children his age he never complains, he faces every day with a positive, fighting attitude. Nico cannot stand or walk on his own, so he is dependent on a weel chair to explore.

Nico is soon starting a new journey in a powerchair. However, we do not have a vehicle that is able to transport his chair. We are looking to get a wheelchair accessible van so Nico can continue life without troubles. We want Nico to challenge the world, seeing and doing everything he can! Every year our family takes a camping trip to the Adirondacks that Nico loves. We often say that Nico will move mountains! Our family loves adventure and traveling but it has been more difficult in the past few years. I (mom) took a different job working from home so I could be with Nico more. In 2023 we hope to bring Nico on his first kayaking trip as well as travel a little more. Having a wheelchair accessible van will be essential to Nico’s life!

Connect with the family

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