CRMO Awareness Virtual 5K Walk-A-Thon - Lejlas CRMO Crew

As many of you are aware, after 6 months of debilitating pain, countless doctors, referrals, and hospital visits, Lejla underwent a two-week hospitalization in February and received a partial diagnosis of CRMO (chronic recurrent multifocal non-bacterial osteomyelitis). This is a rare and serious disease that involves inflammation of one or more bones and can become chronic. Symptoms can be intermittent, and we are hopeful for periods of remission. CRMO causes pain, redness, and swelling. In CRMO, there is no infection; instead, the immune system mistakenly attacks normal bone, causing inflammation and lesions within her bones.

At times, Lejla is unable to move. Currently, she has lesions in both legs, both arms, both collar bones, and her jaw. Her jaw is of particular concern at the moment, as she cannot even obtain the braces she needs due to the risk of collapse.

Regrettably, due to the rarity of the disease, there are no known cures, and treatment options are limited to trial and error for comfort management.

As a family, we are organizing this 5k run for Lejla and the many others affected by this condition in the hope of raising funds to support further research. Our goal is to one day find a definitive treatment or even a cure for those suffering from CRMO.

This is a glimpse into my daughter's life and the daily struggles she faces. We are still seeking a diagnosis for other identified issues, and various teams are working diligently to find answers for us. Since this diagnosis is permanent, we want to raise awareness and educate the CRMO community.

We kindly request your participation in our upcoming 5k event. Whether you choose to join us in person or virtually, your presence will mean the world to our daughter. By showing up, you will demonstrate your support and encouragement, motivating her to continue her courageous battle against this disease.

[b]When[/b]: 8am Saturday October 5, 2024
[b]Where[/b]: North mountain Trail 100 Loop at North Mountain ( 12950 N 7th St, Phoenix, AZ 85022)
[b]Virtually[/b]- you can share your support by sending Lejla words of encouragement @ [i]Lejlaaudrey13@gmail.com[/i]

Lejlas CRMO Crew Members

• Olga Navarro - CRMO Awareness 5K Walk-A-Thon
• Ana Navarro - CRMO Awareness 5K Walk-A-Thon
• Time Isufi - Donation To Kaila's Komfort
• Adriana Vazquez - Donation To Kaila's Komfort
• Laura Delgado - CRMO Awareness 5K Walk-A-Thon
• Lauren Williams - Donation To Kaila's Komfort
• Lejla Albert - CRMO Awareness 5K Walk-A-Thon
• Jessica Perry Ellis - CRMO Awareness 5K Walk-A-Thon
• Olga Loza - CRMO Awareness 5K Walk-A-Thon
• Adalberto Loza - CRMO Awareness 5K Walk-A-Thon
• Julie Waddell-Fleming - Donation To Kaila's Komfort
• Dante Carrazco - CRMO Awareness 5K Walk-A-Thon
• Sanda Bukaric - CRMO Awareness 5K Walk-A-Thon
• Zikreta Bukaric - CRMO Awareness 5K Walk-A-Thon
• Ashley Ybarra - CRMO Awareness 5K Walk-A-Thon
• Sanda Bukaric - Donation To Kaila's Komfort

Lejlas CRMO Crew has raised $805.00.