LOGAN STRONG: Soaring Beyond Primrose

@loganstrong_soaringbeyond

On November 8th, 2023, Logan Peter Manotti completed our family—fulfilling our lives with laughter, love, and wonder. Logan is silly, curious, mischievous, and always ready with a smile that melts your heart.

Recently, our world was forever changed when we learned that Logan has been diagnosed with Primrose Syndrome—an ultra rare genetic condition that can cause developmental delays, seizures, hearing loss, hormonal imbalances, immunodeficiency, and progressive wasting of the muscles. There is currently no cure. But with intensive therapies, specialized care, and community support, we can give Logan the best chance to continue thriving.

LOGAN'S PRIMROSE JOURNEY

From the very beginning, Logan has shown incredible strength. Just hours after birth, he failed his newborn hearing screen. What we thought was a small bump in the road quickly became the beginning of a much larger journey.

In his 22 months, Logan has endured:

Frequent hospitalizations for respiratory illnesses and countless ear and sinus infections, leading to surgery for ear tubes.

Unexpected head growth that required brain imaging and a sedated MRI just after his first birthday.

post anesthesia snuggles…. Some hours later

Increased head size caused delays in motor development—prompting early physical and occupational therapy, which he continues today.

After 18 months of inconclusive hearing evaluations, a specialized sedated test confirmed permanent hearing loss. Logan now uses hearing aids and works closely with speech therapy to support his language development.

Through every test, procedure, and setback, Logan’s smile never faded. He continues to thrive despite each challenge, racing to keep up with his siblings and friends at school.

To be safe, due to Logan’s head size and hearing loss, genetic testing was obtained over the summer and sent it to a specialty lab.

By the start of fall, it felt like the dust was finally settling. Logan was adjusting to his hearing aids, progressing greatly in physical and speech therapy, and with all three kids starting school, we thought we might catch our breath.

Then two weeks into the school year, we got the call: Primrose Syndrome—an extremely rare diagnosis we had never heard of.

FINDING STRENGTH IN HOPE

Though this diagnosis is devastating, we believe that knowledge is power. We are grateful for answers—because now we can give Logan the tools, care, and opportunities he needs for a full and meaningful life.

HOW YOU CAN HELP: Support Logan to Soar Beyond Primrose

Your support will go directly toward:

It is our hope that by sharing Logan’s story, we can help raise awareness and connect the Primrose community, with the dream of establishing a dedicated Primrose Syndrome Foundation. If funds exceed Logan’s needs, they will go toward advocacy and research for rare genetic conditions.

Every donation—no matter the size—makes a difference. If you are unable to give financially, please share Logan’s story. Each share spreads awareness, connects us with other families and doctors, and brings us closer to answers and hope.

From the bottom of our hearts, thank you for standing with Logan and our family. With your love and support, we know Logan can soar beyond Primrose—and together, we can bring hope to all children facing this rare condition.

With love and gratitude,

Pete, Meg, Evelyn, Leo, and of course, Logan