Kaylee N.

Condition: Freiberg Disease (Avascular Necrosis of the 2nd metatarsal)
City, State: Bend, OR
Club: High Desert Middle School Sparrow Club Service Hours: 911
Date Adopted: 11/09/2017

Kaylee's Story:

In November of 2015, Kaylee experienced a minor foot sprain while playing indoor soccer. The injury occasionally bothered her and she had recurrent stress fractures. Throughout 2016 she played sports as she was able to tolerate it, and she was temporarily put back into a walker boot a few times. It became clear in November of 2016, when she just wasn't healing and the pain was becoming worse, that something besides an old injury was keeping Kaylee sidelined from the sports and activities that she loved. The doctor put her back in the boot again, but she wasn't getting better so an MRI was finally ordered in February 2017.

The MRI results revealed that Kaylee has Freiberg Disease (Avascular Necrosis of the 2nd metatarsal). The doctor said it's permanent and Kaylee may never play sports again… which was devastating to her. She is in frequent pain and some of her normal daily activities have been impacted as well.

Avascular Necrosis (also known as AVN or Osteonecrosis) is a painful condition that is commonly misdiagnosed. It occurs when there is an interruption of the blood supply to a bone. When this happens, the tissue dies and the bone eventually collapses. Left untreated, it can lead to destruction of the joint surface. It is painful and can sometimes result in amputation. It is extremely rare and there are not many specialists in the U.S. with experience and knowledge on this disease.

The cause of AVN is not fully understood. The good news for AVN sufferers is that Duke University has revolutionized a treatment for this difficult problem. Kaylee’s family reached out to the specialists at Duke after seeing numerous doctors in the Bend and Portland areas. Their team came up with a treatment plan for her, which involves decompress-ion surgery with stem cell injections to help regenerate healthy bone tissue. This surgery is an urgent need for Kaylee, as she is in a lot of pain.

In spite of these challenges, Kaylee’s strength and determination are such an inspiration to everyone she meets. She never gives up and she is hopeful for the chance at returning to the life she loves… playing sports! She just wants to be a normal teenage girl.

Sparrow Cash raised for Kaylee will help with ongoing medical expenses, travel to Duke University Medical Center, and everyday living expenses. Students at High Desert Middle School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.


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