Kailanie D.

Condition: Chiari Malformation; Lateral Meningocele Syndrome (LMS); Acute Lymphoblastic Leukemia (ALL)
City, State: Forest Grove, OR
Club: South Meadows Middle School Sparrow Club Service Hours: 554
Date Adopted: 1/11/2019

Kailanie's Story:
Kailanie is a brave, determined 3-year-old girl, and her fighting spirit has kept her going since before birth.

She needed her first surgery at just four months old to fix her intestines and place a feeding tube to help her thrive. At about seven months old Kailanie underwent her first brain surgery after being diagnosed with Chiari Malformation. Her brain was growing into her spinal column, causing cerebrospinal fluid (CSF) to fill her head. During this surgery, doctors had to shrink the lower part of her brain, shave off part of her vertebrae and later had to go back and put a shunt in to drain the extra fluid. These were the first of 19 surgeries Kailanie would have to endure in her first few years of her life.

Along with the diagnosis of Chiari Malformation, doctors noticed numerous sacs of CSF or meningocele, surrounding nerves weaving in and out of vertebrae. No one at Doernbecher Children's Hospital had ever seen that many meningoceles on one person before. Through Kailanie's neurosurgeon's research, she was diagnosed with Lateral Meningocele Syndrome (LMS).

As part of the LMS, Kailanie has a harder time with mobility and speech. She has had to fight for every milestone but has the determination to win. Loose joints, scoliosis, and low muscle tone make mobility challenging. Kailanie accepted the challenge and was walking unassisted at 2 ½ years old. In addition, a soft cleft palate has delayed speech, but she is making huge progress.

In February 2018, her determination to win was tested when she was diagnosed with Acute Lymphoblastic Leukemia (ALL). Treatment has been difficult due to LMS. Doctors had to get creative since Kailanie couldn't have any of the typical spinal tap/injections.

By March 2018, Kailanie was in remission. She is now in the maintenance phase of her treatment. Kailanie will finish Leukemia treatments in September 2020.

She is smart, feisty and loves to have fun. She enjoys playing games, the outdoors, watching YouTube and spending time with her family. Kailanie also loves Paw Patrol, Baby Alive and Mowana. Family and friends call Kailanie their “Unicorn-Superhero-Warrior-Princess”. Having LMS made her a limited edition and her Leukemia has made her one-of-a-kind.

Kailanie will be adopted as a Sparrow to South Meadows Middle School. Students will work hard to not only love and support her, but raise money for Kailanie through sponsored community service and fundraising.


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