• Maddie's Story

     

     

  • Maddie Lane Demers was a beautiful, vibrant, active and fun loving 10 year old who lit up a room. In May of 2016, after Maddie complained of knee pain, her parents (Barbie and Mike) took her to the doctor expecting to learn she had growing pains or a mild sports injury. Routine tests revealed suspicious shading on the bones in Maddie's leg, so she was referred to an orthopedic specialist. Confounded, but sure it was a serious issue, the specialist urged Barbie to rush Maddie to a children's hospital in Orlando.

     

    After a painful biopsy, several grueling tests, and a bone scan, the culprit had a name: Multi Centric Osteogenic Sarcoma, a bone cancer so rare that most doctors will never see a single case in their lifetime. It was in almost every bone in her body, and it was also in her lungs.

     

    Maddie began aggressive chemotherapy, which she called "Spider Juice"- a tribute to her favorite hero (Spiderman) and a way to lessen the fear around the side effects of chemo. Because there was so little known about this cancer, her treatment was one that was used for more common forms of bone cancer, but it did not prove to be effective.

     

    After Maddie's care team in Orlando broke the bad news that the cancer had spread instead of responding to treatment, hospice was recommended. Unable to accept such a crushing defeat, and hoping against all odds, Maddie's family began scouring the earth for alternate therapies.

    Pediatric oncologist, Dr. Peter Anderson of the Cleveland Clinic, whose sub-specialty is osteosarcoma, encouraged Barbie to bring Maddie to Cleveland for treatment...and while the family made that brave journey, Team Maddie was born.

     

    An unexpected wave of support and love came from all over the world as Maddie's family, friends and the community came together to help. Prayer chains and kind wishes poured in as Maddie's smile and courageous spirit seemed to inspire loved ones and strangers alike. Barbie and Mike were blessed by people giving whatever they could to help with exorbitant medical and travel expenses.

     

    Maddie fought a long and hard fight in Cleveland, where she participated in an experimental protocol using Radium223, an injectable form of radiation never used on a cancer of her kind before. Though it was too late to save her life, the therapy she had showed great promise and it was helpful in reducing her tumors.

     

    On January 5, 2017, Maddie gracefully and bravely decided it was time to rest. She is free now…free from suffering and pain. She made her bold and beautiful mark in this world; filling everyone's heart with joy and connecting the lives of friends and strangers alike.

     

    Though Maddie knew her treatment was not a guarantee, she was passionate about using her situation to help others. Her courage paved the way for patients to receive insurance approval for innovative treatments.

     

     

    Maddie's Fight Foundation will continue to honor Maddie's amazing legacy by accomplishing three important goals:

    • Helping other families who have been financially impacted by the cost of caring for a sick child
    • Supporting innovative research focused specifically on pediatric Osteosarcoma  
    • Raising awareness about the need for alternative treatments for cancer

    When traditional medicine fails, Maddie's Fight Foundation hopes to inspire families to search for other options. We also hope to encourage and empower people to get involved and make a difference for children with cancer.

     

    Maddie's Fight Foundation humbly thanks everyone for the prayers, gifts, kind thoughts, donations, and support. We are forever grateful to be surrounded by such a helpful and loving community.

     

    Please continue to pray for Maddie's family!

     

     

  • Contact Us

    Email: maddiesfight@gmail.com

    Address: Maddie's Fight Foundation

    25201 SW Martin HWY Okeechobee, FL 34974

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