When Miranda speaks about her son, Steven, the first word that comes to mind is strong. “I remember working on PT with him at home, and I remember seeing his leg strength increasing and his neck strength increasing, and, oh, I was so excited, so happy.”
Steven’s was born with agenesis of the corpus callosum and was diagnosed with Leigh syndrome at six months old by then he had started vomiting so severely that he could not keep anything down or gain any weight. “We did swallow studies and found out that he was not swallowing [safely], so he got the NG tube, and then later the G tube and later again the GJ,” Miranda explains. Steven also needed a specialized ketogenic diet. After his diagnosis he lived at the hospital the majority of the time minus a few weeks spaced out up till the time of his passing.
Steven was hospital in February and diagnosed in March 2025 with a rare EARS2 gene mutation. Which he inherited it by receiving a recessive EARS2 gene from both his mother and father. Miranda became an expert on his condition.
The medical challenges were relentless. Steven struggled with his ketones, and his lactic acid levels, as well as metabolic acidosis. Steven also suffered from hypotonia, seizures and severe dystonia that presented as extreme back arching with intense tensioning of his arms and legs, eventually loosing control over his movements including his eyes, sometimes rolling back, described as painful and overwhelming to watch.
Despite everything, Steven still found moments of joy. Nurses affectionately called him “Mr. President” because of his strong, noble name — Steven Cole Swango.
Miranda treasures the rare sounds of his coos. “To be honest, I never really got to even hear him babble or really smile. I got a couple of coos right before we went to the hospital. And in the hospital, we were able to get him to coo at us a couple times, and it was the most beautiful sound,” she recalls. “He was like the perfect little puzzle piece in my arms when we would cuddle and I would just hold on to him, and I will never forget that.”
Steven was the youngest of four, with three older siblings who had to adjust to life with a very sick baby brother. His eldest sibling understood much of what was happening. “I know whenever it came down to that time, I left it up to her if she wanted to say goodbye to him or not, and she did, until she was ready to go,” [leave] His brother didn’t understand so much at the time but understands more now and talks often about how much he misses his baby brother.
Steven passed away on June 25, 2025, at ten months old surrounded by loved ones and in his mothers arms “I love my son so much, and I wish he was here,” Miranda shares. “But nobody should go through [the pain he endured].”
Steven leaves behind a mark of courage, joy, and love that will never be forgotten. Even as her older children continue to grapple with grief, his memory and spirit remain woven into the fabric of their lives.
Miranda draws strength from her faith and her son’s memory. She still wears a shirt that says “God is Good,” even in the wake of devastating loss. She keeps some of his blankets close, wraps herself in them, and uses those moments to stay grounded and more present with her other children.
“He may not be here, but because of him, his brother and sister have an even better mom than they had before. I appreciate things in a different way. I slow down now, and I am still not perfect, but I strive to be better for him and for my kids. He gave me [a] new perspective in such a big way,” she explains.
Miranda offers guidance to other families facing rare diseases. “You have to take care of your mental health. In the end, these doctors are great, the nurses are amazing, but if you are at home with your child, that load is on you. You just cannot do it if your morale is down, if you are depressed, if you are beaten down,” she says. “When you have to cry, cry. But if there is something funny, you have to laugh. It is not selfish. It is strength.”
Steven’s life, though brief, reminds us that love and courage are not measured by the length of our time here. His story is a testament to the power of a mother’s love, the importance of advocacy, and the ways a child can transform the lives of those around them, in ways that last far beyond their time on earth.
