Jelien Sirenma Ramos, also known as "Baby" by her family and "Beans" by friends, is 3 years old. She's the youngest of 7 kids and is the most lovable, funny and charismatic little girl. On January 25th 2019, a little over a month after turning 3, Jelien was rushed to the ER at Maria Fareri Children's Hospital, with suspicion of a low platelet count accompanied by an ongoing fever that reached as high as 106 degrees. After getting the blood cultures back, Jelien was given an emergency blood and platelet transfusion as her body didn’t have the necessary defenses. After a bone marrow biopsy on January 30th 2019, Jelien was diagnosed with B-Cell Acute Lymphoblastic Leukemia (ALL). The following day Jelien went into surgery to get a port placed on her chest. This port is used to administer chemo treatments as well as a method to obtain a blood culture. Jelien is on several medications and has had many chemo therapy treatments that have weakened her little body. Due to her treatment, she has been in and out of the hospital. Jelien loves spending time with her family, especially her siblings. She enjoys going to the park, as well as singing and dancing. She has the most contagious smile that makes everyone’s day. Her family and friends have built strong bonds together and have faith that this Warrior Princess will come out victorious!
Skylar Hurley was born on November 14, 2017. Growing up, Skylar hit all her milestones on time and lead a pretty happy infant life bringing joy to everyone she came across. One day, as her mother Amanda was getting Skylar ready for their day, Amanda noticed that Skylar stopped making eye contact and being the giddy girl everyone knew. Thinking Skylar had an off day, Amanda and her husband James gave her a couple more days to see if anything would change. Unfortunately, that day never came. Doctors diagnosed young Skylar with Rett Syndrome.
Rett Syndrome is a genetic brain disorder that typically becomes apparent after 6 to 18 months of age. Symptoms include but are not limited to problems with language, coordination, and repetitive movements. It is an extremely rare disorder that affects one in every 12,500 females and has no known cure.
Amanda has had to give up her devoted career in the medical field to be a full time stay-at-home mom for Skylar as well as her aide, leaving all financial burdens to James. Being the only source of income, James is burdened with having to work extensive hours of overtime to support Skylar’s medical needs, since insurance does not cover a lot of the expenses. Her parents will do anything to give Skylar the love and joy she needs regardless of what hurdles may be ahead. They have hopes and dreams of one day seeing Skylar walk, talk and finally get to hear what Skylar’s beautiful voice may sound like when she finally is able to simply say, “mommy, daddy.”