Silas is a seven-year-old boy living in Derry, NH with his mother, Melly and his father, Matt. Silas loves to listen to music, loves to go swimming, and loves to be with his parents.
We invite you to read more about his story and support Silas through a purchase from our shop where every purchase will go towards a swing set with a special needs swing so Silas can play outside with his friends and cousins. You can also subscribe to our podcast and hear our interview with Silas’ parents releasing May 31st.
“Our day-to-day life looks so different from your typical family, but we’ve learned to navigate it quite smoothly, to advocate, and to be a voice for the voiceless and to ignite hope in the idea that everything will work itself out – even when it seems impossible.”
When Silas was born he had a traumatic brain injury due to complications during Melly’s labor, and was further diagnosed with Hypoxic Ischemic Encephalopathy (HIE), Spastic Quadriplegia Cerebral Palsy, Epilepsy, Microcephaly, Plagiocephaly, Dysautonomia, Neurostorming, Dystonia, and Cortical Visual Impairement.
Silas was diagnosed with Neurostorming this past year after Matt and Melly tried to figure out what was causing extreme irritability in Silas. Symptoms of storming include: severe irritability, sweating, tachycardia, thrashing, dystonic posturing, moaning and grimacing. He was actually misdiagnosed several times before they received the right answer. Silas has dealt with irritability since birth, but it worsened over time. Melly shares, “When Silas is happy, he is so happy, grinning from ear-to-ear, belly laughing, “talking” and “singing” and up for anything. But when his storming kicks in it’s as if he is glazed over, a prisoner to his body trying to break free.”
Melly was able to utilize the power of social media by posting videos of Silas during a moment of irritability and it was then that many of her followers said the behavior was definitely storming. It took quite a bit of advocating with doctors for Melly and Matt to finally find answers and to hear that the behavior was in fact Neurostorming. More than 50% of Silas’s day is spent screaming and fighting his Neurostorming. They have had to switch to a homeschooling program for Silas due to the frequency of the storming. Right now there are not many treatment options and it is a lot of trial and error to figure out what works best for him.
“I want to bring more awareness to this because so many suffer from this without knowing there is a diagnosis and treatment plan for it, and without knowing that, then there are others out there whose kids are also suffering,” Melly shares.
While Silas is considered non-verbal, he does communicate with facial expressions, hand gestures, and with three phrases that he regularly uses. As Matt says, “Just because they’re non-verbal doesn’t mean they don’t have a personality or they don’t have anything to say. They have a lot to say. I could have a full conversation with him with just his three phrases that he says. He will say ‘I do’, ‘I go’, or sometimes he will say ‘no’.”
Throughout this journey Melly and Matt work hard to find the positive. They work every day to ensure Silas is happy and living his very best life. They are dedicated to Silas and to each other as well. They have learned to grow closer and lean on one another for support. In the beginning this was not always an easy task. Melly says, “We sat down and we were like we’ve lost who we are as a couple with Silas. We’ve lost us in this. It’s a lot of surviving the day and feeling like roommates and feeling like passing ships in the night. You have to take time to remember how you got here and how you came together. We decided we are going to put it into our budget and we are going to have a date night every single week and we are going to go out and it’s going to be just us.”
Their advice for parents facing a diagnosis or going through their own rare medical journey with a child is simple, but profound – “Stay focused on the present. Slow down. You can’t get caught up in what life’s going to be like in 5 years, 10 years, 15 years.”
Time to get loud shouters!
Throughout the month of May we will be shouting love for Silas and four other kiddos with their own special and unique stories. We hope you will join us in getting to know these five incredible families.