BENEFITING: FANCONI ANEMIA RESEARCH FUND INC
"Chellie's Challenge" is a fundraising project developed to honor Marcella DiSandro's fight with Fanconi Anemia (FA).
Sadly, cancer first touched Marcella’s life when her older sister Adriana died at the age of nine from Leukemia, after battling cancers for all of her young life. Marcella was only three years old at the time of Adriana's death. Her family history with this disease is a heartbreaking one. Her own journey with the disease also started at a young age when she developed an extensive form of skin cancer. She had to be extremely careful in the sun and religious about checking her skin. Though controlled with surgical removal, the instances of skin cancer continued to develop despite her diligent efforts. And so Marcella raised the question: Why?
In 2010, Marcella took her question to her doctor who suggested a possible hereditary link between her and her sister’s cancers. She encouraged Marcella to pursue genetic testing which brought her to the team at the University of Pennsylvania.
Thorough testing brought her doctors to the determination that there was undoubtedly a genetic link, but they had yet to pinpoint a specific disorder. Based on their findings, they speculated that Marcella would encounter at least five different cancers in her life. They suggested that she undergo bi-yearly, preventative body scans to detect cancer as early as possible. Now her real journey with cancer began.
At the age of 24, these scans were justified when colon cancer was detected. Miraculously surgery was successful, and she recovered well. Marcella could now add survivor to her list of attributes. She felt lucky and scared at the same time about what the future would bring.
As Marcella continued to carefully monitor her health, her doctors continued to seek answers for her condition. After further genetic testing, the diagnosis of Fanconi Anemia was finally attributed as the link between Marcella’s condition and that of Adriana’s. Her family was faced with the prospect of loss again. Fanconi Anemia is a genetic disorder that primarily affects bone marrow and the reparation of cells in the body. Most individuals with this disorder develop a variety of cancers throughout their lives and have shortened life spans. Fighting FA was now added to Marcella’s list of challenges.
The next few years were filled with numerous procedures, including frequent medical scans and surgeries. She faced her challenges one day at a time. One such scan revealed an abnormality in her brain that required her to undergo an invasive, awake craniotomy in June of 2013. Her bravery was incredible! She recovered and went back to work. Again, surviving another battle.
Despite diligent, preventative measures and frequent monitoring, in 2014 she was given the heartbreaking diagnosis of Small Cell Neuroendocrine Carcinoma, an aggressive and terminal cancer. She has fought this final cancer with continued bravery. By choosing to undergo chemotherapy treatments Marcella has given the greatest gift to everyone around her – time. Time to love her, time to spend with her, and time to watch her bravery shine through at insurmountable levels.
Treatments have made Marcella very sick and after four months of aggressive chemo and many hospital stays, her doctors feel that her body can no longer handle further chemo. She recently made the decision to start in-home hospice and is being cared for by her family. As always, love, laughter, family, and friends surround Marcella during this final journey.
Marcella has one last fight to fight and needs your help. She would like to leave a legacy behind by raising money for this rare genetic condition. Her favorite quote "Everybody dies, but not everybody lives" is so well demonstrated by this final expression of love to help those who might have this future fight with FA. Please help Marcella with the Fanconi Anemia fight and donate today.
Update: Sadly, Marcella lost her battle with cancer on September 23, 2014. She passed peacefully, surrounded by family, love and music. The overwhelming response to this fundraiser brought her great joy during her final months of life. Please continue to support this amazing cause as a way to honor Marcella's memory.