Lily Grace

Lily was born Elizabeth Grace Robertson in the spring of 2010. She was a happy baby and toddler until she stopped developing gross motor skills. You probably already know what happens next. Nine months later we finally got a diagnosis: late infantile MLD. We had her 6 month old sister tested as well and thankfully, she was only a carrier.
Life with MLD changed and challenged us in many ways, constantly keeping us reassessing how to best care for Lily. It also showed us how many people were inspired by Lily’s grace and the love we gave her. She loved going to school to see friends, doing art projects, and swimming. Lily also loved being held and snuggled, music of all kinds (especially church music on Sundays), travel, going to concerts, butterflies, the color purple, petting and cuddles with our 2 cats, going to the roller rink, meeting Elmo, the Disney princesses, especially Ariel. Most of all, Lily loved seeing and being with people.
We could tell all of this even though she was non-verbal and non-ambulatory. She had a spirit in her that glowed and we have heard from so many people from all over the world who were touched by Lily.
On March 5th of 2020, at almost age 10, Lily flew to heaven. Her body was just done.
I love and miss her very much but truly believe that her purpose was fulfilled. She inspired thousands to live their best life, and taught me what is really important: love.

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