Stem Cells For Kaylee's AVN Disease

In November of 2015, Kaylee experienced a minor foot sprain while playing indoor soccer. It wasn't serious and she was back to sports within a few weeks. The injury occasionally bothered her and she had recurrent stress fractures. Throughout 2016 she played sports just here and there 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 this past 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. She is beyond devastated and it has now been nine months since Kaylee has been able to participate in sports. She is in frequent pain and some of her normal daily activities have been impacted.

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 some times 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. Duke University operates on the cutting edge of foot and ankle bone disease treatment. A few months ago we reached out to the specialists at Duke after seeing numerous doctors in the Bend and Portland, Oregon, areas. Their team reviewed all of Kaylee's imaging and medical records and have come up with a treatment plan for her. We feel very confident that they will be able to help Kaylee.

The treatment involves core decompression surgery with stem cell injections to help regenerate healthy bone tissue. The stem cells will be collected from the bone marrow in Kaylee's heel. Unfortunately, stem cell injections are not covered by insurance and, since it's an out-of-state, special surgery, the cost is very high because the surgery is not covered either. There are no specialists in Oregon who perform this procedure. AVN progresses very fast and the stem cell injections will only be successful in stages 1-2. Once the bone collapses stem cell will not work. Thankfully, a CT scan this past May has revealed no sign of imminent collapse. It did, however, reveal several other concerns regarding fusions in part of her ankle bone, and we know the AVN symptoms in her foot are degenerative. This surgery is an urgent need for Kaylee.

All of this means we are looking at medical costs beyond our means to afford. We are reaching out asking for your help. Kaylee is a true athlete and has endured hardship after hardship in the last two years. We need your help to give Kaylee a chance at returning to the life she loves playing sports! More than that, we ask for your help to prevent Kaylee from ever being impacted beyond that.

Thank you so much for any support you can give.

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Marissa Nagel 
Bend, OR

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