Please help the Davis family celebrate Allegra’s treatment milestone and help others diagnosed with histiocytic disorders.
When Allegra was 26 months old, she was diagnosed with Langerhans cell histiocytosis (LCH) after a mass from her head was removed January 2016 by neurosurgeon Dr. Jonathan Martin at CT Children’s Medial Center (CCMC). Six months later (July 2016), we got the unfortunate news there were three more tumors, two in her head and one in her pelvis. The tumor by her optic nerve was the most concerning. Chemotherapy and high levels of steroids was our next course of action, which started immediately since surgery was not an option (led by Donna Boruchov, Hematology & Oncology, Cancer & Blood Disorders of CCMC).
LCH is a rare disease that causes an overproduction of white blood cells that can lead to organ damage and formation of tumors. It’s a parent’s worst fear to hear terms like tumors, neurosurgery, chemotherapy and potentially fatal when talking about their child. This has truly been a life altering experience. There is no cure, however there are treatments available. Fortunately, after completing a year of chemotherapy (August 2017) Allegra’s prognosis and response to treatment has been excellent and we are cautiously optimistic. Through her courage, energy and strength, she has been an inspiration to us and others.
There is little known about the cause and effect of this disease as with the other histiocytic disorders. It is so rare that it is classified as an orphan disease. Since there are not enough people affected by the disease, the government funds very little research into treatments and a cure for these diseases. The research that has been done is funded by donations and fundraising. That is why we are trying to do our part to raise money for research.
In an effort to spread awareness and give back on Sunday, November 19, we are celebrating Allegra’s milestone, which coincides with her and her twin brother’s 4th birthday. All donations will benefit the Histiocytosis Association, a 501(c)(3) organization dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.
(Please note 100% of your donation will go to Histiocytosis Association, a 501(c)3 non-profit. Credit card fees do apply.)