Nicole: Can you share a little bit of Nico’s journey with us?
Maria: Nico was diagnosed with a rare genetic mutation in the ATN1 gene at 6 months of age. He is one of 11 kids in the world with this newly discovered syndrome recently named CHEDDA. CHEDDA stands for Congenital Hypotonia, Epilepsy, Developmental Delays and Digital Abnormalities. He has faced many medical complications due to his condition and spent the first year of his life mostly within four walls of a hospital room. This however never eliminated the spark in his eyes. No matter how many times life has knocked him down he comes back stronger every time. His strength however is not the kind you find in a muscle. His strength is in his warrior spirit and relentless love. He has more strength than anyone I personally know. I believe it’s that spirit of strength that has allowed him to overcome all his battles in his young life. That strength that shines through every smile.
Nicole: What are Nico’s greatest strength?
Maria: Nico’s greatest strength is simply his spirit. Even as a newborn Nico had this spark in his eyes that let me know things were going to be okay. Having been followed by the palliative team while in the hospital I can honestly say that his biggest strength is always leading the way. Always showing us the path that is right for him.
Nicole: What are Nico’s interests?
Maria: Nico loves Disney movies or any movie with lots of music and lots of colorful characters and voices like Trolls! He is mesmerized by music and enjoys to be part of any conversation around him. He loves to sing and dance in his own unique way.
Nicole: What is your mission as an advocate for Nico?
Maria: My mission is to bring awareness not only to his condition but to all the children out there that are not seen or heard because they are labeled as nonverbal or special needs. It’s so important as a not only a parent to my son but also as a sibling to a brother with special needs to remind people that children and adults with disabilities are people first regardless of any label placed upon them. They are people first, and as people we need to remember that they feel what we feel, and they need what we need. We as humans want to be seen, heard, accepted, and loved. And, if by chance someone who has an undiagnosed older child find us and sees characteristics in their child similar to Nico, I think it would be incredible to get them an answer they have likely been waiting for their entire lives. Because, this syndrome is newly discovered the oldest child known to have it is about 12 yrs old. Genetics wasn’t as advanced even 15 years ago so although we only know of 11, there may be more people out there with Nico’s condition that have just gone undiagnosed for years.
Nicole: What has Nico taught you?
Maria: My son has in three short years taught me more about life than the last twenty years before that. For our entire family Nico has really highlighted the true meaning of life and what we are truly here for and that is to love.
Nicole: What resources have been helpful for you on your journey?
Maria: I truly believe social media is the best resource out there. There is a community of parents here that wish nothing more than to help others on their journeys through the world of special needs. Finding those people through social media is priceless. They not only have so many resources if they themselves have been on this journey for a while but they can relate to the struggles we face as parents.
Nicole: What do you want the world to know about Nico?
Maria: I just want the world to be a more accepting and inclusive world not only for Nico but for so many others living in a world not built with children of different abilities in mind. I think we can do a lot better when it comes to inclusion as a society and that is why I will always support organizations on a mission to make the world a better place.
You can follow Nico’s journey on social media at @finding_our_rainbows, here.