My daughter Aleya is a brave resilient 15 year old who spent most of her life fighting medical battles no child should ever face.

In 2017, she underwent a laminectomy to dissect part of a brain tumor located within her spinal cord. While the surgery helped address part of the tumor, it resulted in kyphosis, a progressive spinal deformity. Since then, she has remained on ongoing treatment for the residual tumor and has continued to face challenges related to her condition.

With the tumor now stable, because of the clinical trial she’s on, she decided she wanted to correct her 100 degree kyphosis. In hopes of getting to have some sort of normalcy for once in her life. She was placed in halo traction on November 10th she was doing great. On December 8th she underwent a release of her spine that was supposed to help her spine stretch more, she did great for a week. Then she started to decline in balance & mobility. Despite repeatedly voicing concerns about her worsening condition, imaging was not completed until I strongly advocated for further testing. When scans were finally performed, the severity of her spinal deterioration became clear. There was fluid that was compressing her spinal cord. They were able to drain the fluid but when they went to close the incision she lost all of her spinal function. So not only is her wound site still open, she is now unable to walk or even attempt to get out of bed because of the fragility of her spine . She has been like this for a week and will remain in this state until after her fusion, which is scheduled for Jan 5th. That is a very risky surgery in itself but she now has to face that with all of the other complications. We don’t know how she will come out of that. Or if she will even be able to walk. All of this is happening while she continues treatment for the tumor within her spine.

Managing an active tumor alongside severe spinal instability has made this journey especially complex, painful, and frightening.

As Aleyas only parent my world has narrowed to one focus: being at her bedside and advocating for her care. The road ahead includes major surgery, prolonged hospitalization, rehabilitation, and significant financial strain from medical expenses, travel, and long-term care needs.

Any donation, share, or prayer helps relieve the financial burden so I can focus fully on helping my daughter heal and find her strength again.

Thank you for taking the time to read our story & for standing with us during this unimaginable time.