Lily Pad the warrior princess has been a fighter from the very beginning. She was so anxious to come into this world that she made her grand entrance at 28 weeks weighing only 2lbs 1oz and measuring 12 inches long. Her prematurity resulted in permanent brain injuries . Lily Pad lives with Bilateral Periventricular leukomalacia (PVL) which is a type of brain injury that affects infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates "holes" in the brain. She also has grade 3 Intraventricular hemorrhage (IVH) which is bleeding into the ventricles of the brain. She also lives with Hydrocephalus which is a condition where the fluid spaces in the brain (ventricles) become enlarged.

Due to Lily Pad’s brain injuries, she was diagnosed with an aggressive form of epilepsy called Infantile Spasms (IS). Infantile Spasms is an uncommon epilepsy syndrome. It is considered to be a catastrophic childhood epilepsy which may cause developmental delays. Lily has gone through extensive therapy to try to control her condition and we are excited to say that we've seen a huge reduction in seizure activities but lives with extensive global delays. She also battles CVI (Cortical Vision Impairment), Brain-stem auditory pathway dysfunction which affects her hearing , cerebral palsy and a long list of other conditions.

Due to her conditions, we find ourselves fighting with our insurance company to cover equipment she so desperately needs. We recently were denied coverage for the following:

  • Wheelchair
  • Stander
  • Bathing system
  • and some basic medical supplies
Any little bit helps! 

Despite her conditions, Lily Pad has an amazing soul that would melt any heart. She is strong and an inspiration to Luis and me as well as many who follow her journey.

To learn more about Lily Pad's Journey, join us at www.letterstolilypad.com
 
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