I decided then that no child should have to buy these kinds of books. They should be freely available, because kids fighting for their health have enough to worry about.”

Madison Holden

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It typically takes about two decades from birth to reach the milestone of college graduation — a major turning point in most people’s lives. Many are in their lower to mid-twenties embarking on their first career and booming with independence. But this coming-of-age story did not play out that way for Madison Holden, who became bedridden immediately after graduating college.

Not much in Holden’s life has been typical, though. Growing up on a houseboat with her three siblings and parents, she lived what most would call an “unconventional lifestyle.” She even pointed out that she felt “house-sick” when she moved into her first home on land in fifth grade. “It is so funny that after I moved into a house I would say I felt ‘house-sick’ the way most people would say they felt seasick on a boat — because the house was too still. I was used to being rocked to sleep by the water,” Holden laughed as she shared this memory.

The thoughts of her younger self entered her mind as she remembered being sick as a child. “Looking back, I now know I didn’t feel well, but at the time I thought it was normal. I would always get sick after eating food and I had an unexplained limp. But again, I didn’t think much of it at that time,” Holden explained.

Nevertheless, she made it through school, was accepted into Rhode Island College, and set her sights on exactly what she wanted to do — teach children. But throughout college she became increasingly (and more noticeably) sick. After graduation and landing her dream job as a second-grade teacher, she became bedridden. “Right as I was about to begin my dream job, I became severely ill,” she explained.

Her path to diagnosis took years. She detailed, “At first, no one could explain what was happening. It took years of advocating for myself to finally receive diagnoses — multiple complex, rare diseases that would change the course of my life entirely.” These diagnoses, after seeing doctors in Rhode Island, Boston, Massachusetts, Maryland, Connecticut, and New York, came from a doctor back where she first began seeking help — in the Ocean State. 

Silly Lily offers hope

“Pradeep Chopra at the Center for Complex Conditions in Pawtucket, Rhode Island, was the one who began to piece everything together for me,” shared Holden. After his initial insights, she would be diagnosed by multiple doctors across state lines with the following: median arcuate ligament syndrome, cervical Instability, cerebrospinal fluid leaks, mast cell activation syndrome, eagle syndrome, stomach paralysis (resulting in feeding tubes), Chiari malformation, and spastic paraplegia type 7. This lengthy list only represents a fraction of her diagnoses.

Holden has spent much of her time in hospital beds or at home — in bed, receiving treatments to help sustain her life. She shared, “In just the past year, I’ve endured open abdominal surgery, spinal surgery, parts of my skull removed, spinal fluid leaks, multiple feeding tubes, and experimental therapies — like having my body heated to 108 degrees.” 

Not only did she have to give up her dream of teaching children, her privilege of driving was taken away, and she has so many medical devices that it is difficult to leave her home. Her life is nothing like she imagined it would be at 24 years old.

But while hospitalized in Germany during the summer of 2024, Holden began to glimpse a new way to fulfill her dream of helping children. She began writing a book that led to the creation of her nonprofit — The Silly Lily Foundation — which became a form of life support, helping her remain in the driver’s seat, even though she could no longer drive.

“That’s where “Silly Lily and Her Feeding Tube” was born — a version of my younger self, written to comfort kids going through similar experiences,” she shared. She went on to say, “I still wanted to help children, even if I could no longer be in the classroom.”

 The books are free to children battling illnesses — a decision close to her heart. She shared, “I decided then that no child should have to buy these kinds of books. They should be freely available, because kids fighting for their health have enough to worry about.”

Silly Lily started as a single book in the hospital, but now, in Holden's office — which has since become her bedroom in her home in Middletown — the next installment in the series, “Silly Lily and Her Port,” has been created and will soon be released.

Holden is looking forward to the future growth of Silly Lily with the help of Brian Ferreira and Charles Woodward from the Newport Area Career and Tech Center who are building her a custom office in her backyard. According to Holden, it’s there that The Silly Lily Foundation can grow into something more — to give hope to children, in what she frames as “a heart full of hope.”

A heart full of hope from Silly Lily