2-Hydroxyglutaric Acidura types D and L combined

July 13, 2019 – November 3, 2019

“Beautiful flowers only bloom for awhile, and our beautiful Lily was no different.  Strong, delicate, vibrant, and energetic; she blossomed into our lives and left seeds of  strength and love in our hearts!”  
 ~Michael and Erin 

Liliana Marie was born in Neenah, WI on July 13, 2019 and died on November 3, 2019 in Wauwatosa, WI at Children’s Hospital of Wisconsin due to complications from the rare metabolic disorder 2 Hydroxyglutaric Aciduria types D and L combined. 

Liliana came home and filled her parent’s house with joy.  Unfortunately, she had some feeding issues that led to her be re-hospitalized.  After seeing many doctors, a neonatologist also found out that she had other symptoms that are difficult to diagnose in an infant (such as seizures, hypotonia, and different responses to stimuli).  She was sent from Mercy Hospital to St. Elizabeth Hospital where she resided for ten days.

At St. Elizabeth’s Hospital, she appeared to be improving every day.  She would keep down some food from her bottle and the rest through a feeding tube.  She greeted her mom and dad with beautiful blue eyes and smiles on many visits even though she was going through multiple tests in order to reach a diagnosis.

After ten days, test results came back showing high amounts of hydroxyglutaric acid in her body, and she was transported to Children’s Hospital of Milwaukee.  Even after receiving her terminal diagnosis, Lily fought through many medical procedures to give us beautiful memories and time spent together in the hospital. 

Lily is survived by her mother Erin; her father Michael; her grandparents Misty and Craig and Ed and Mary; her godmother Kim; her godfather Matthew  and aunt Adrianna; and her Aunt Meghan. 

The family would like to thank Fiss & Bills-Poklasny Funeral Home, St. Raphael Church, and the caregivers of Oak Hill Cemetery for their very kind support and care during this very difficult time.  A memorial fund will be established in lieu of flowers to the Organic Acidemia Association to provide support in research and management for all inheritable genetic metabolic disorders including 2 Hydroxyglutaric Aciduria types D and L combined.

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