By Amanda Lewis – Reporter, KCCI In Des Moines
DES MOINES, Iowa (WCCO) — It’s easy to tell when Preston Tassi is upset. But when he’s happy, it’s a little tougher. His mom, Sarah Tassi, says she and her husband Jason have never seen Preston smile.
He was born with Moebius Syndrome, a rare neurological disorder.
“When he was born,” Sarah said, “right away noticed the hand.”
Preston has only one finger on his right hand, a symptom of Moebius.
Upon further examination, doctors determined Preston couldn’t blink, look side-to-side or even close his lips around a bottle.
“As we feed him, we have to hold his cheeks in,” Sarah said.
He’s not slow. He dad says he shines at weekly therapy sessions. Like most one year olds, he’s almost walking. But without control of his lips and tongue, his speech and eating development will lag behind.
What doctors can do is restore some muscle function around his mouth through surgery. They’ll take a muscle from his thigh and place it in his jaw. It’s called “smile surgery.”
Dr. Nate Noble, Preston’s doctor at Blank Children’s Hospital, says physical therapy can also help.
“Certainly you hope with therapy and surgical interventions, that the Tassi family is working towards, you hope things get better,” Noble said.
Sarah says she’s been told Preston can’t have the surgery until he turns five, and it’s an expensive procedure.
“We’re assuming about $100,000,” she said. “That’s kind of our goal right now.”
Its money the Tassis don’t have. They’ve moved in with her parents to begin saving. But Jason says he and Sarah were committed the moment they met their bubbly little guy.
“It’s unexplainable,” he said. “My mom always told me you’ll never understand how much you can love a child – and I kinda always thought she was blowing smoke.”
Noble said doctors don’t yet know why kids are born with Moebius Syndrome, why the cranial nerves are damaged or missing or exactly what challenges each child will face.
“I would anticipate in the future as medicine catches up with Preston he will have a lot to teach us,” Noble said. “But at this point there’s a lot of conditions where we just know that we don’t know.”
In the meantime, Sarah and Jason say they aren’t afraid of hard work. And when Preston giggles, they say they will look in their little boy’s eyes.
“You can tell in his eyes when he’s smiling,” Sarah said.
“We just feel blessed to have him in our lives,” Jason said. “Every second of it.”
There is an online fundraiser for Preston, which you can reach by clicking here.