Help Rylee Battle Leukemia & NS

          Rylee was born prematurely at 35 weeks on 12/13/16. She was 5lbs 14oz and sent to the MMH (Manatee Memorial Hospital) NICU for TTN, Neonatal Thrombocytopenia, and Jaundice. She was discharged on 12/22/16 with strict orders to follow up after the holidays for blood work. On 1/4/17 at the pediatrician’s office, a CBC was performed which demonstrated her WBC (white blood cell count) was 65k (normal range 10k). She was sent to MMH ER for further evaluation. In the ER her WBC was 60k and she also had a right neck mass, which an ultrasound demonstrated a complex cystic and solid mass with vascular flow behind the right ear. She was transferred that evening via ambulance to All Children's Hospital for direct admit to further evaluate. The neck mass turned out to be lymphadenitis and tested positive for MRSA. She was treated with IV meds and an I&D was performed by General Surgery on 1/08/17. During her stay, doctors noticed poor weight gain and diagnosed her with failure to thrive, she was put on a higher calorie formula 26cal.     

          On 1/12/17 an echocardiogram was performed, secondary to a harsh systolic murmur. The echocardiogram demonstrated ASD(hole in her heart) (5-6 mm), mild flow acceleration in the branch pulmonary arteries. Cardiology was consulted and on 1/17/17, while in the hospital, she developed URI symptoms and was positive for rhinovirus. During our 2 week stay, we had seen several specialists, including Genetics, who was consulted for DNA testing for possible Noonan Syndrome, and Hematology to confirm JMML (Juvenile Myelomonocytic Leukemia). We were discharged home to the Ronald McDonald House on 1/18/17 and on 1/31/17 she was readmitted for bone marrow aspirate and observation. Rylee was discharged again on 2/1/17 & on 2/6/17 she was readmitted for fever and persistent leukocytosis. On 2/10/17 test results for Noonan Syndrome came back positive for PTPN11 mutation and JMML. They started her on 6–MP a liquid chemotherapy, for her leukemia, 3 days a week. On top of all these medical issues, she had milk allergies & severe acid reflux and still wasn’t gaining any weight. She was 6.9lbs (birth was 5.14lbs) and was put on Zantac and Zofran for the reflux, and also finally found a formula that she could keep down (Similac Alimentum) 26calorie (normal calorie being 21).

          During our hospital stay we were informed about and blessed with the Ronald McDonald House, due to my living conditions not being so great, and I was able to have my two other girls Aubree 4 & Kaylee 2 with me. We stayed there from 1/08/17 till 4/26/17.  Aside from all Rylee’s medical needs, our financial struggles seem to get greater and greater ... I was trying my best to pay off all my fines to get my driver’s license back so that I could get us reliable transportation, I'm proud to say I was able to pay the $2,130 and get it back but since leaving the Ronald McDonald House we have stayed in a motel ($65anight) close to her treatment center and it has taken all we had saved and then some.  I'm currently waiting for approval from social security, while I’m not able to go back to work ( i was a nanny for a few children but had to relinquish my job duties due to Rylee’s immediate medical needs.) and only receive 60$ a week in child support.  We are desperate for help. We would love to have a place to call home and a reliable car. I will not give up hope as God never gives us more than we can handle But We sure can use all the prayers, support, advice, shares and love you have to give. Thank you for taking the time to read our story. God bless <3