‘She Just Took Off’: 3-Year-Old With Rare Disease Gains Mobility

Since the day she was born, Kailyn Bennett has been fighting for her life. Diagnosed with a rare genetic disease, doctors said the 3-year-old would lose her sight, hearing and ability to speak or move.

But now, she is taking a step to change that.

"We've sort of tried to find ways to make all of those things happen," said her mother, Jessica Bennett.

With the help of a team of physical therapists at Emerson Hospital, Kailyn has begun to take her first steps, and even her first drive. Seated in a toy car that was retrofitted and donated to meet her needs by Massachusetts-based Numotion, Kailyn Bennett can finally feel what it is like to move on her own.

"We got her strapped in, and she just took off. She lit up," said Jessica Bennett. "It's everything that she loves."

The diagnosis of Trichothiodystrophy, a disease that impacts roughly 60 people in the world, came with a life expectancy of just a few years.

However, Kailyn Bennett's parents have committed themselves to ensuring their daughter lives each day to the fullest. Through her therapy at Emerson's Westford location, she has seen increased mobility and even hit a milestone birthday — her third year — in the fall.

"We're going to fight for her to get every birthday that we can," said Jessica Bennett. "We are going to celebrate every birthday that we can, and enjoy every minute in between."

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