Meet Lani, Our Pfeiffer Warrior Princess

KeiLani Jones, or Lani, is a 2 year old with beautiful brown eyes and a big personality that helps her overcome her adversity. Last year she was diagnosed with Pfeiffer Syndrome.

“Oh Lani! Our little walking, talking, breathing, thriving miracle!” says her mom, Melissa, from Milledgeville, Georgia, where her husband Keith Jones, and 13-year-old son, Kamden live.

Lani Jones

KeiLani Jones, or Lani, is a 2 year old girl with beautiful brown eyes and a big personality that helps her overcome her adversity. Last year she was diagnosed with Pfeiffer Syndrome.

Lani was born at 26 weeks on May 18, 2016, in Athens after a complicated pregnancy and emergency C-section. Her neonatologist suspected something was “different” with Lani and suggested a few tests be run. Twelve days later, Lani was flown to Augusta, where she spent 87 days in the NICU.

“I really do not remember much of 2016, after Lani came home,” Melissa says. Life got consumed with follow-up appointments and more specialists being added to her treatment team.”

Pfeiffer syndrome is caused by a gene mutation that causes premature fusion of the skull sutures, broad big toes and thumbs and affects 1 in 100,000 children born.

The Jones family discovered the Atlanta Ronald McDonald House in July 2018 when Lani was lifeflighted to Children’s Healthcare of Atlanta at Scottish Rite after a procedure. Lani spent 27 days in the PICU.

The Ronald McDonald House provides respite for the Jones family. During the week, Melissa stays with Lani at the House near Scottish Rite, while Keith and Kamden return home to resume their life at work, school and sports.

On the weekends, the family spends time with Lani at the House, together. “Something we both feel is imperative to the bonding process of our little girl,” says Melissa.

Keep up with Lani’s progress by liking the Facebook page, “Lani’s Journey” or @PfeifferWarriorPrincess