Helping Kelly

My beautiful sister, Kelly, has been diagnosed with an incredibly rare and aggressive soft tissue cancer, known as Poorly Differentiated Chordoma. Upon diagnosis, we learned that it has already spread into her bones and down her spine, with multiple lesions. This news has shattered our hearts and brought us to the most challenging and painful time in our lives. The last three months have been an unimaginable rollercoaster, one we wish we didn’t have to live. We have witnessed her enduring unimaginable pain and new, debilitating symptoms. Some days, the pain has been so severe that she loses all mobility and is bed ridden.

The cancer, a C3 cervical chordoma, had taken over 60% of her spinal cord, causing severe neurological symptoms, including limb weakness, excruciating nerve pain, and limited movement. Despite these overwhelming challenges, my sister has been fighting this battle with everything she has. At diagnosis, she had to undergo emergency radiation treatment on the largest chordoma at the C3 location and has now just finished a second course of radiation targeting multiple lesions in her thoracic and lumbar spine.

As a lasting effect of the radiation, Kelly has developed muscle tightness and stiffness in her neck, resembling symptoms of muscle fibrosis as a secondary condition. Alongside all the remedies she is trying, she is now incorporating weekly acupuncture sessions to help relieve this tension.

Sadly, we know this is not the end of the road. Kelly is now facing the daunting reality of needing systemic treatment in the near future. Because her cancer is so incredibly rare—affecting only 1 in 10 million people—there is no established traditional treatment plan. 

There are many daily limitations we are facing, let alone Kelly living this daily battle, however the most heartbreaking challenge is that we do not having legal access to preferred radiotherapy option, Proton Beam Therapy, or to a promising drug, called Tazmetostat, which has shown potential in treating this type of Chordoma overseas. We are now confronted with the possibility of exploring a clinical trial or pursuing immunotherapy, which we’ve since learned will also need to be self-funded.

These treatments come with overwhelming and unexpected costs. Whilst our family is doing everything we can to support her, and with Kelly being unable to work, she is reluctant to burden us with these financial challenges.

We are reaching out to you, our community, for support. Any contribution, no matter how small, will help my sister access the treatments she needs to fight this cancer and reclaim her life. We are determined to turn her story into one of hope and triumph—a story she can share with others who are facing similar battles.

Please join us in supporting my sister on this difficult journey. Together, we can help her become a beacon of hope and a testament to the power of love and community.

Thank you from the bottom of our hearts.