My precious niece Hiba is the only girl in a house full of boys. She is always happy, friendly and affectionate. She is petite for her age but is very much a vibrant and adventurous 3 yr old. Everyone that gets to know her falls in love with her sweet personality.
Hiba seemed to be a healthy and happy toddler until she woke up 4/4/2019 with some ulcers in her mouth and red spots on her chest. She spiked a fever and had 2 seizures. She was taken to Johns Hopkins childrens ER. Her white blood cells, red blood cells and platelets were critically low. A bone marrow biopsy was done and confirmed a diagnosis of aplastic anemia. This is a rare blood disorder thats causes bone marrow failure. Her white blood cells have dropped to 0.1 (normal 5.5-15.5), hemoglobin 4.5 (Normal 11.5-15.5) and platelet count of 8 (normal 150-450). She has been receiving blood and platelet transfusions every 2-3 days. They cannot transfuse white blood cells. Hiba does not have any immunity against any bacteria/virus/fungus. She is extremely vulnerable to a potentially fatal infection until the bone marrow transplant is complete plus months of recovery after. Any fever is an emergency and requires an emergency room visit and re-admission.
Numerous blood and bone marrow tests (many genetic tests) have been sent to identity a cause. One test was sent to the University of Chicago and costs $3000 alone. They have done HLA testing on some of us to see if we are a transplant donor match which takes 2 weeks to process. In the meantime she will be making clinic visits for blood and platelet transfusions 3 times a week. Once a donor is identified, they start the pre-transplant treatment which is intense and requires her to be in the hospital for a few weeks to receive immunosuppressants, chemotherapy and radiation. If that is successful then she will receive the transplant. Post-transplant she will be hospitalized for months after while her body rebuilds a healthy bone marrow and immune system. This will require one parent to be with her for a week at a time while the other stays home with her brothers.
This is placing an overwhelming, stressful and unexpected financial burden on my brother Abdul Rahman and my sister in law Adiyba . My brother will have to apply for FMLA. They anticipate a 6 month long journey to full recovery. The costs of current ER visits, admissions, clinic visits, extensive blood and bone marrow testing for her and donors, hotel costs, regular cost of living & expenses, the bone marrow transplant and the post treatment care are extremely expensive.
In addition to your love, support and prayers, if anyone would like to help by giving a gift donation to help cover Hiba’s expenses it would give the family some relief in an extremely difficult time, and they can focus on making sure sweet little Hiba has what she needs to recover, Insha Allah.
Anything is welcomed and appreciated.❤
Jazakum Allahu khayran