Magnolia “Maggie” was born at 35 weeks after a difficult but healthy pregnancy. Despite everything seeming fine, she entered the world not breathing. Maggie spent the next 82 days in the NICU—eight weeks at Golisano and four weeks at UF Shands—undergoing countless tests: six EEGs, numerous EKGs, two MRIs, dozens of X-rays, extensive bloodwork, and ultimately, genetic testing.

At exactly one month old, we received a diagnosis: Maggie has a rare genetic disorder called Congenital Disorders of Glycosylation, RFT1 subtype. Even more staggering—she is one of only 16 people ever documented in the world with this condition.

This diagnosis comes with many challenges: seizures, hypotonia, feeding difficulties (she is g-tube dependent), hearing loss, and global developmental delays. The past 11 months have been incredibly difficult—emotionally, physically, mentally, and financially. We’ve faced numerous hospital stays, 911 calls, a fixed-wing emergency flight to Gainesville, and a life-altering helicopter transfer to St. Petersburg. That moment ultimately led to our decision not to return to Fort Myers. Within weeks, our family uprooted our lives and moved permanently to St. Petersburg to be closer to the care Maggie needs.

In order to care for her, I’ve had to step back from my full-time job and now work PRN (as needed), and Kevin made the incredibly hard decision to leave his position as an occupational therapy professor. He is currently searching for work in St. Petersburg so we can better support Maggie while staying close to her medical team.

Since the move, the financial strain has only grown. Between Maggie’s medical equipment (hearing aids, a stander, and a medically approved stroller), her medications, multiple therapies (four times a week), and frequent doctor appointments—often weekly—the costs have been overwhelming.

This fundraiser is not only an effort to help cover the cost of her essential equipment, but also a celebration. A celebration of Maggie’s strength. A celebration of one full year with our extraordinary daughter. Though this year has brought immense hardship, it has also brought unimaginable joy. We don’t know how much time we have, but we are soaking in every moment we get with her.

Thank you for being part of her story.

T-shirts

The Story Behind the T-Shirts:

T-Shirt 1: She is our little wildflower
A nod to her spirited soul — resilient, rare, and beautifully untamed. Some might say wild child...

T-Shirt 2: She is 1 of 16
Only 16 known cases share her exact condition. These 16 rarest flowers — handpicked by Google (lol) — represent each of those extraordinary lives, including hers.

T-Shirt 3: Her DNA was written by Him
Perfectly crafted by God’s hand, her genetic code is no mistake — it’s a masterpiece. "He wrote her code line by line perfectly rare by God's Design"

T-Shirt 4: Her brainwaves, her melody
Part of her condition includes Lennox-Gastaut Syndrome, which affects the rhythms of her brain. These sound waves were inspired by her unique wavelengths — unmatched, beautiful, and entirely her own.

Sponsors

Magnolia's Garden of Hope

By Magnolia's Garden of Hope

Magnolia's Garden of Hope

1st Birthday Fundraiser