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Mar. 24, 2016

TOPIC: Patient Stories

Living with ALPS

Posted by Emily Fishman

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with hospital visits to find a diagnosis. Fortunately, the NYU Hospital for Cancer and Blood Disorders answered their cries for help. Nicole was diagnosed with Autoimmune Lymphoprolifertive Syndrome (ALPS), a rare genetic disorder of lymphocyte apoptosis. Laura said, “We finally found our guardian angel.” after finally learning what was affecting Nicole’s health.

Even though there are no known treatment options, Nicole battled through eleven years of therapies, trying to avoid the chemotherapies and transfusions that kept her in the hospital. Through The Children’s Hospital of Philadelphia, Nicole found a trial medication that has given her the “normal” life that she did not have as a kid. It was that day that the Roublick’s found their “second guardian angel.” The Roublick’s are very thankful for their doctors and her improvements. Although they can’t know what tomorrow brings, Nicole and Laura Roublick will keep fighting and stay hopeful for the future.

2 Responses to “Living with ALPS”

  1. m bradley says:

    So thankful that you all found your answer. Isn’t that the hardest part–searching, hoping, waiting years for an answer? Our daughter did not have ALPS but the hardest part was encouraging our daughter, all through her childhood, to try this one new medicine, take this one more test, try this new doctor. No one can ever understand the heartache unless they have been through this kind of process. Blessings to all of you for finding help and I certainly hope that Nicole has had lots of psychological servicing to help deal with the difficult childhood she had to endure. We often remind our daughter, “We can’t change the past but we can make a new beginning.”

  2. Brigitte Dagenais says:

    M’y 3 years Oldman d’autres have the same thing. What is the name of the trial médication ?