Three-year-old Simon is magic. He recites books by heart and takes daily runs through the trails near his house. He can shoot baskets in a kiddie basketball hoop… while sitting on the floor. He makes people smile without even trying. He is lively and chatty, and exuberant and loud in the best way possible.
Simon’s life is a gift for his mom Alina and dad Jeremy. After receiving chemotherapy for triple negative breast cancer, Alina was told she would never have children of her own. In 2016, her miracle boy Simon was born. Magic.
And like magic, there is more than meets the eye.
As Simon grew, Alina and Jeremy had a sense something was wrong. He wouldn’t respond to his name and he wasn’t walking. At 15 months old, Simon was connected to Any Baby Can’s Early Childhood Intervention (ECI) program to address developmental delays. Simon received specialized skills training and behavioral, cognition, and speech therapies.
“Thinking back, there were just so many things he wasn’t able to do. And we were just so overwhelmed as to where do we start,” says Alina, Simon’s mom.
Alina and Jeremy soon learned that Simon was hard of hearing. While he passed his newborn screening, it seemed as if he was losing hearing in both ears. Any Baby Can helped him secure hearing aids and began implementing strategies such as sign language.
“We thought, okay Simon is hard of hearing. That explained some things and allowed us to modify strategies, but behavior and attention continued to be an area of concern,” says Jackie Gregory, Specialized Skills Trainer at Any Baby Can.
In 2018, the family finally got an answer. Simon was diagnosed with Sanfilippo syndrome, a rare genetic condition in which the body is not able to process cellular waste. Eventually every bodily function degrades, including the brain. Sanfilippo syndrome often goes undetected for years as most children are born with no visible signs that anything is wrong. The disorder is degenerative and fatal with a life expectancy of 15 years, at best. There is currently no treatment or cure.
Children with Sanfilippo eventually lose the ability to eat, walk and talk, before an untimely death. All the skills that Simon, his mom and dad, and his therapists are working hard to build may inevitably be lost. Despite this diagnosis, and in some ways because of it, Simon’s team is committed fully to him and his development. Recently Alina and Jeremy found out about the only clinical trial for Sanfilippo in the world, and have been eagerly waiting to get accepted.
And so the work continues. Simon worked on a weekly basis with Any Baby Can’s ECI program, building skills with the hope that the ending will be different for him. He continues to receive medical case management and hearing aid support from Any Baby Can.
We don’t know what the future holds for Simon. But we’re capitalizing on the moments he has and giving him a chance to be his best while soaking up the joy he brings every day.
“Without our therapists, I don’t know where Simon would be. I don’t know where I would be. I needed a village to raise Simon and Any Baby Can is that village,” adds Alina.
For now, Simon is an animated, rock-throwing, three-year-old boy. He has hearing aids and developmental delays. And he has a grim prognosis. But he is the embodiment of hope and love and magic.