THE BEBA PROJECT
Ylime, my daughter, which prefers to be called Beba, is 19 years old, was diagnosed with AUTISM and ODD around the age of 2. Because of early intervention and therapies, she has come a long way and I am proud to say that she graduated from high school. Because of her frequent meltdowns, and health issues, I have not been able to work for the past 11 years.
On her 13th birthday, Beba was diagnosed with
Systemic Lupus Erythematosus (SLE). is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. Presently, there is no known cure.
Because of her Autism/ODD diagnosis, it is impossible for her to take oral medications. Her condition was somewhat controlled over the years, with occassional Steroid Infusion Treatments. In the last couple of years her condition worsened to the point where she began Chemotherapy Treatment. Evetually Lupus began to take her on a roller coaster ride where she would have moments of no symptoms, to sudden painful rashes and pain.
Things with Beba seemed to have calmed down enough in the middle of last year, that I felt "safe" enough to go out and look for employment. I was told about a position open that was close job that was close to my home. I was very honest with them with regards to my daughters health issues. All was well until September 29th, 2016. Beba began fevers of 104.8 that would not come down no matter how hard we tried. After having been seen by her Pediatrician we were immediately sent to Lutheran Generals ER. My new job lasted just 3 days.
To make an already long story short, Beba has continued with constant flare ups to this present day. Since September, she has also been diagnosed with the following:
Prolonged QT - a heart condition, Lupus Nephritis - She is currently has Stage 3 kidney damage, and Chronic Pancreatitis
Because of the treatment for Pancreatitis, she developed Pleural Effusion and was treated in the Pediatric ICU for 4 days.
She has dealt with hair loss, (hence the reason I also shaved my head), blood clots, (needing 2 shots daily of blood thinners), skin rashes and sores, oral thrush, weight loss (she has lossed 50 lbs since September 2016), and not being able to walk for more than 15 minutes without experiencing back and joint pain throughout her entire body resulting in the need of a wheelchair.
In the next few months, hopefully sooner than later, Beba will need a Gastric Feeding Tube placement. This g-tube will allow her to receive the medication, food and nutrients, her body desperately needs.
Needless to say, this has not been easy. Constant hospitalizations and doctors appointments, have taken a toll on both of us especially since we do not own a vehicle of our own.
This is where your help would come in handy.
We have created this GoFundMe page and will be planning a number activities between now and November in order to raise funds to purchase a vehicle to take her to and from her appointments, and for the medical expenses.
I hope you can all join us and we thank you in advance.
Emily
