In a quiet home on Florida’s Treasure Coast, Friday afternoons have a rhythm of their own. It begins with the soft strum of a guitar, the tap of a drum, and the sound of a small boy discovering the joy of music one beat at a time.
Max Biesok is two years old. He lives with Trisomy 18, also known as Edwards syndrome, a rare and severe genetic condition caused by an extra copy of chromosome 18. The disorder can lead to significant developmental delays, low birth weight, and multiple organ complications, particularly involving the heart and lungs. According to the Cleveland Clinic, most infants diagnosed with Trisomy 18 do not survive beyond their first year.
Max, however, continues to surprise people.
He receives hospice care through the Visiting Nurse Association of the Treasure Coast (VNA), which provides a team of specialists who visit him at home. Hospice for pediatric patients focuses not only on comfort but also on supporting development and quality of life. For Max, that includes physical therapy and occupational therapy several times a week, along with one of his favorite appointments: music therapy every Friday.
His music therapist, Anna Womack, arrives with a guitar, drums, and a playlist of familiar children’s songs. When Anna can’t make it, her colleague Tatiana fills in. But usually it’s Anna, and Max seems to know it the moment she walks through the door.
“He always lights up when Anna comes in,” says his mother, Jessica Biesok. “He always has a good time with the music therapist.”
What might look like play is actually carefully structured therapy. For Max, music is both emotional and physical. “It gets him moving, and he actually interacts and feels the drums,” Jessica explains. “They’ll put the drum on his feet or his feet on the drum so he can feel the beat. He’ll pick his foot up and put it down again. It really encourages a lot of movement for him, which is exactly what we want.”
Max was born in Port St. Lucie before being transferred to a children’s hospital in Miami shortly after birth. He spent eight weeks there before Jessica made a decision she felt strongly about. “I never thought he was going to leave the hospital,” she recalls. “But I finally said this is enough. He’s stable. He doesn’t really need the oxygen. He needs to go home. If something, God forbid, does happen, I want him home with family that can see him and surround him with love.”
After being transferred to hospice care a VNA representative visited them at home and walked them through the services available. Jessica remembers being surprised by one important detail.
“They told me hospice is usually six months to the end of life,” she says. “But because Max is a pediatric patient with a terminal diagnosis, he can stay on hospice for his entire life—whether that’s six months, six years, or 60 years.”
Max’s medical condition includes brain abnormalities, including a thin cerebellum and issues with the corpus callosum, though thankfully he has not experienced seizures so far. He also wears a brace because Trisomy 18 can lead to scoliosis. Despite those challenges, his heart and lungs — the organs most commonly affected in children with the condition —are currently functioning well.
The therapies he receives, Jessica believes, have made a tremendous difference. “I truly credit the PT, OT, and music therapy,” she says. “Without that, Max wouldn’t be where he is today. He wouldn’t be as progressed as he is.”
During a recent session, Anna begins strumming her guitar and watches Max closely. “Max is loving the guitar more and more,” she says with a smile. “You should have seen him the other day. I thought he was rocking out against the headboard.”
Sometimes the signs are subtle. His head moves with the rhythm. His feet tap. Other times his reactions are unmistakable.
“Do you want to do another song, buddy?” Anna asks him gently. Then she begins singing “The Wheels on the Bus,” drawing out each verse as Max listens.
Music therapy for Max has evolved as he’s grown. When he first started, Anna focused heavily on sensory experiences: placing drums beneath his feet so he could feel vibrations and learn to tolerate new textures and sounds. “I used to put his feet on the drum so he could feel it through his feet,” she explains. “Now we’re working more on grasping and using his hands.”
During the session, Max suddenly stands up. Anna seizes the moment. “Since you’re standing,” she says brightly, “how about we shake our sillies out?”
She launches into the energetic song, and Max begins moving along with the rhythm. The room fills with laughter, music, and the small but determined motions of a child exploring what his body can do.
Anna coordinates closely with Max’s occupational and physical therapists to align their goals. Sometimes all three therapists are in the house at once. “There have been times they’re all here together,” Jessica says. “They kind of work with him all at once, which is really nice.”
Anna cycles through familiar childhood favorites, including “If You’re Happy and You Know It,” “The Itsy Bitsy Spider,” and “The Ants Go Marching” — encouraging Max to clap, stomp, or reach for instruments. Each song becomes a chance to practice movement, coordination, and communication. “His grip has improved so much,” Anna says. “And he really focuses on the music.”
As the session winds down, she strums a gentle goodbye song. “Today we did some dancing and some moving, and we played some instruments,” she tells him.
Max looks tired but content.
“It’s time to say goodbye, Maxy,” Anna sings softly. “Can you wave goodbye?”
In a life filled with medical appointments and uncertainty, these Friday afternoons offer something beautifully simple: music, movement, and a little boy who keeps finding new ways to join the song.
