Everyone, we need help now . My friend found out that her baby girl Jess has been diagnosed with OPSOCLONUS-MYOCLONUS SYNDROME, an extremely rare neurological disorder (1 in 10 million) that is associated with ocular , motor , behavioral,sleep, and language disturbances , which was a brutal diagnosis.
Jess underwent a CT Scan to rule out any tumors , but unfortunately one was found on her adrenal gland.
Last month Jess had to have surgery to remove her entire adrenal gland to be safe since the tumor was attached . Jess spent 3 nights where they found a neuroblastoma tumor that is often involved in cases like this . They performed surgery to take it out and will perform additional tests to make sure the cancer did not spread to her nervous system .
Jess was absolute rockstar for the removal as well as the bone marrow test . Jess’s mom Aisha decided to donate some of her bone marrow to researchers since her diagnosis is so rare and hope it will help get answers for her .
Jess’s mom was living in Long Island , New York and been working off the book with a valid tourist visa . Because of the New Trump Immigration Policy Deportation across US she decided to move back to Haiti because she end up overstaying on the time period on her I94 . She didn’t want to be deported . She moved to Haiti with Jess .
Jess will start an aggressive treatment plan that include IVIG Immunoglobulin Therapy Occupational Therapy and Speech Therapy . She will likely to start on the drug rituximab. She will have some hospital nights she can come home . She will have countless scans to make sure no cancer spread to her nervous system and to check in on her to the Best Specialist in Boston since it’s all so rare too .
They are living Haiti on Monday August 26 ,2019 to Boston and she is scheduled for her treatment August 28,2019
Please call her or message Aisha Melyssa Day at (509)40337171