#LanisJourney

DREAM TRIP

TO DISNEY WORLD & GIVE KIDS THE WORLD VILLAGE

Goal: $6,000

Her Fragile Beginning

Lani was born in Athens, Georgia, arriving far too soon at just 25 weeks. Weighing only 2.3 pounds, she came into the world as a micro preemie, already fighting for her life. On top of her fragile start, she was born with chorioamnionitis, a serious infection of the amniotic fluid and membranes.

Her NICU journey was nothing short of a battle. Over 87 days, she endured countless procedures and moments when her tiny body nearly gave out. She survived four code blues, was placed on ECHMO, and underwent procedures that most adults never face. Yet on day 87, against all odds, she was discharged and sent home with oxygen, monitors, a feeding tube, and an entire team of doctors. By the time she was just 8 months old, she was already under the care of 27 specialists.

The Diagnosis

At 18 months old, genetic testing revealed the answer: Pfeiffer Syndrome, a rare disorder that causes the premature fusion of bones in the skull, face, hands, and feet. This diagnosis explained her challenges with breathing, vision, and growth, and it meant her life would include countless surgeries.

The Fight of 2023

Over the past nine years, Lani has endured procedure after procedure. Her most difficult battle came in February 2023, during what was expected to be a routine LeForte II facial advancement surgery. Instead of a five-day stay, she faced a devastating chain of complications, including a skull base disruption, cranial reconstruction, a tracheotomy, two pneumocephalus, and a VP shunt. Infection forced doctors to remove part of her skull, leaving her with a skull defect that still requires repair.

That surgery kept her in the hospital for nine months. During that time, she lost the ability to walk, talk, eat, drink, or even play. Once medically stable, she was transferred to intensive rehab, where she worked tirelessly to regain her strength. Slowly but surely, she began to speak again, eat on her own, breathe without machines, and play with her favorite toy.

Life Today

Before this setback, Lani loved her gymnastics gym, where she spent years tumbling, playing, and being part of her gym family. Losing the ability to be a “ninja” has been one of her hardest sacrifices. Her airway and lungs were severely affected by her surgeries, leaving her unable to handle prolonged activity, extreme heat, or overstimulation. Yet despite these limitations, Lani is thriving. She runs short distances, laughs with her friends, attends school, and fills every room with her endless chatter.

Her mom shares, “Watching her fight through every obstacle breaks my heart, but her courage inspires me every single day. She may face more challenges than most, but her joy and determination remind us never to give up hope.”

During our interview with Mel, Lani’s mom, she shared that beyond the incredible dream of this trip, she wants people to know about Pfeiffer Syndrome. She hopes Lani’s story raises awareness of this rare condition so that other families who may be walking a similar path know they are not alone. Pfeiffer Syndrome affects the growth of the skull and face, often leading to serious breathing issues, vision concerns, and the need for repeated surgeries. By telling Lani’s story, Mel hopes to bring attention not just to her daughter’s resilience, but also to the reality of living with this diagnosis.

“More than anything, I want people to know that Pfeiffer Syndrome exists. I want to raise awareness, share Lani’s amazing story, and show the world just how strong and beautiful she is.”

Her Next Chapter

Lani’s journey is far from over. She still faces more surgeries ahead, including airway reconstruction and repairing her skull defect. But she faces each step with courage, resilience, and a spirit that refuses to quit.

And that is why today, our mission is to raise $6,000 to send Lani and her family on a once-in-a-lifetime trip to Disney World and Give Kids The World Village, a whimsical place built for children battling life-threatening illnesses. This experience will give Lani something she has fought so hard for: the chance to just be a kid. To trade hospital walls for fairy-tale castles. To laugh freely, play fully, and create unforgettable memories with her family.

With your help, we can make this dream a reality, not just for Lani, but for many children like her. Together, we can give them hope, healing, and the gift of joy they so deeply deserve.