Layla – you left us one year ago, at 3:58am on July 8th, 2017, in your mother’s arms, surrounded by your dad and big brother Luke, and more love than we ever thought possible.  There was no name for your brain disorder, no prognosis, no medical protocol to follow to help you gain brain development or to manage your seizures and pain.   While your eyes were healthy, your brain could not interpret sight.  Your ears were healthy, but your brain could not interpret sound.  You were perfect in every way, except for your brain disorder.  You fought gallantly — continually displaying levels of grit, determination, and grace that we’ve never witnessed before.  While you were with us for only 2 years, 2 months, and 29 days, your legacy will live on forever, impacting countless families in need – and it ought to be acknowledged.

Here is a small list of your incredible achievements this past year since you’ve been gone:

  • Your fundraising page has raised over $40,000 for Children’s Hospital Los Angeles
    • Your 3rd birthday celebration on April 9th, 2018 raised over $4,000 alone, and it has become an annual fundraising event at Tin Roof Bistro in Manhattan Beach, CA
  • Through this beautiful video we recorded to raise awareness of the incredible hospice work Dr. Glen Komatsu and his team perform, you have raised over $25,000 for TrinityKids Care Hospice, the largest hospice care program for children in Southern California
    • Musician Ed Sheeran personally donated $10,000 after seeing your video campaign
    • Medical trainers have shared this video with hundreds of hospice doctors across the country, highlighting the need for better communication skills with patients and their families
  • You donated both of your healthy corneas, giving the gift of vision to a 4-year-old girl in the Dominican Republic, and a 76-year-old woman in Arizona
  • You donated your heart valves to those in need
    • They have passed quarantine and have been deemed “available and safe for transplant,” they are just waiting for up to two matching recipients
    • Your gift of heart valves, when they find good matches, can help save the lives of up to two children or adults in need, who might suffer from heart disease or be born with birth defects
  • Much of your unused medical supplies were sent to an orphanage in Mexico that “is committed to providing a safe home, opportunities, and education for the homeless and helpless children of Tijuana.”
  • Your larger medical equipment and supplies went to children in hospice care here in Southern California
  • By donating your hearing aids, you provided the gift of hearing to a local 5-year-old girl whose family could not afford hearing aids for her
  • You had a nurse’s station on the 5 East wing of Children’s Hospital named after you – you were a “regular” on that floor, constantly treated like the “Warrior Princess” you were by the amazing team of nurses and medical professionals who helped you fight your fight throughout your journey

With those amazing doctors and nurses having your name on their wall, they are provided a constant reminder of the miracle work they perform every single day to patients and their families.  We have been contacted countless times by the nurses that cared for you, both in our home and in the hospital, who convey the fact that you made them better at their jobs, requiring them to dig deeper, learn more, and push harder.  With every single nurse and medical professional that met you during your 2-year battle, they became better at their craft.  By the power of compounding, you have bettered the lives and the care received by countless children and their families, for years to come.

You had 16 teams of doctors, nurses, and medical professionals following your case and providing care for you and your complex brain disorder.  Many of these doctors had never been forced to communicate with one another prior to you coming along and impacting their lives.  Thanks to the gift you provided them, they are now offering a more comprehensive standard of care to their patients.  Again, we cannot begin to estimate how many children will be saved and/or healed thanks to you and the legacy you have left behind.

Layla – we will never understand why this had to happen to you and why your quality of life had to suffer to the extent it did.  Your inner beauty somehow overshadowed the sheer awfulness of the situation, and everyone that met you left with a smile on their face, feeling lighter than they did when they entered the room.  You somehow became a ray of hope and sunshine in an otherwise dark and bleak situation.  We vow to keep that spark alive and can’t wait to see what impact you will continue to have on those that learn your story and follow the legacy you have created.

We love you forever and ever and ever…

Mom, Dad, and Luke

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