Amanda Bohannon remembers her late daughter Marlowe with tears but also with much laughter.

Marlowe Treglown was 18 years old when she passed away this August, after living her life with a rare syndrome called Sanfilippo Syndrome. The disease keeps a person’s body from being unable to break down long chains of sugar molecules called glycosaminoglycans.

Bohannon was just 18 herself when she became Marlowe’s mother, and only 22 years old when she learned her daughter had the disease, which is fatal for most children before they reach age 20.

Spending most of that time as a single mom, her life, she says, was anything but normal. A family outing meant having to plan for wheelchairs, packed diaper bags and, at times, oxygen tanks.

Her living room was overtaken with medical equipment.

“It’s not a normal life,” Bohannon said.

Bohannon wants to celebrate Marlowe’s life and help other families with disabled children with a home called “The Sweet Cocoon.”

The name comes from a poem Amanda wrote her daughter on her 17th birthday — “You are a precious caterpillar wrapped in a sweet cocoon, who’ll emerge a beautiful butterfly in Heaven way too soon.”

The life of Marlowe

As Bohannon said in her poem, Marlowe’s life was precious. Even though her disease robbed her of her speech and, eventually, her ability to walk, Marlowe loved people.

And she loved to aggravate them, Bohannon said.

She remembered nights of carrying Marlowe to bed, warning her not to bite her. But her daughter didn’t listen, eventually biting her mother’s shoulder.

She loved to hear the sound of a barking dog.

“Something about it made her go crazy,” Bohannon said.

Marlowe reached people she didn’t even know. Bohannon was approached at lunch once by a woman who had seen the family at the movies weeks ago and just wanted to comment on how special they were.

For most of Marlowe’s life, Bohannon raised her alone. She married David Bohannon just four years ago and they adapted to life.

Bohannon went back to school and got her nursing degree.

She studied on one end of the couch, with the ever-mischievous Marlowe at the other end often kicking away her study materials. 

A cerebral hemorrhage claimed Marlowe’s life on Aug. 20. Bohannon saw it as a sign that it was Marlowe’s time, and it was time for Bohannon to start fulfilling her dreams.

Another sign happened at Marlowe’s funeral. The family burst into laughter as a dog near Marlowe’s grave started barking, knowing how Marlowe reacted to a dog’s bark.

The Sweet Cocoon

Bohannon had the vision for The Sweet Cocoon before Marlowe’s death.

Her vision includes a large tract of land that includes a home where families can come and be together. There would be no worries for just a few days about medical bills and doctor’s appointments, and no worries about people staring at them and wondering what was wrong with their child.

She wants something for the siblings, who often feel overlooked. Alli Foster, Bohannon’s nearly 16-year-old daughter, plans to help.

Bohannon has incorporated and is working on becoming a 501(c)(3) organization, which would make donations tax-deductible.

Besides land, Bohannon hopes to find an accountant who can help with setting up the 501(c)(3). She has a website at www.thesweetcocoon.com where you can learn more information.