MayRoseLilli
  • Home
  • Brief Medical Summary
  • Medications
  • Daily Schedule
  • Blended Diet Recipe
  • Care Providers
  • Hospitalizations and Medical Care
  • MayRose's Medical Records
  • Pregnancy - MayRose
  • Pediatric Brain Injury
  • Sarah Jane Brain Foundation
  • Developmental Delays
  • Cortical Visual Impairment
  • Diamond Blackfan Anemia
  • Rehabilitation Therapy
  • Siblings of ill Children
  • MayRoseLili Foundation
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MayRoseLilli Foundation

MayRose's story is filled with challenges and courage. MayRose, born three months premature, was diagnosed with having Diamond Blackfan Anemia after she was discharged from the NICU and later went into anemic shock, during which she suffered diffuse brain damage. This diffuse brain damage led to MayRose developing Developmental Delays, Cortical Visual Impairment and she is prone towards siezures. She receives extensive rehabilitation therapy and medical care, takes numerous medications, and was in the hospitalized nine times between January 2009 and January 2010. She recently was hospitalized in April and May of 2011.

This website was created to:
(1) Help MayRose's care providers share information through posting her records;

(2) Keep friends, family and coworkers up-to-date regarding MayRose's continuing medical developments;

(3) To provide information and knowledge to families suffering from the above-mentioned conditions (especially for families located in Las Vegas, Nevada); and

(4) To educate potential volunteers who want to assist with the national initiatives being advanced by the Sarah Jane Brain Foundation.

MayRoseLili Foundation

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