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About Team Adelia
The Adelia Dundas Foundation is a 501(c)3 non-profit organization dedicated to financially supporting families of children in medical crisis, furthering the advancement of research for Aicardi Syndrome, and providing bereavement support to other families who have lost children. Our mission is to make a meaningful impact on the lives of these families during their difficult times. We believe that by coming together to support each other, we can create a stronger community that will help us overcome any challenge. Thank you for considering to support us today.
Adelia's story
Adelia’s life was filled with fun adventures. She loved visiting her extended family for birthdays and holidays and was fortunate to spend time with six of her great-grandparents. She attended preschool and kindergarten at Plainview Elementary and 1st-4th grades at Southgate Elementary in Austin. Her love of live music began as an infant sitting in community band rehearsals in Lansing, IA, and continued at daddy’s band concerts, choir concerts, church, Sunday school, and anywhere else with music. Her CD player was rarely turned off, and she could sing along with nearly every word of Frozen, Moana, and other movies. She could sing before she could speak and learned her favorite songs “Jesus Loves Me” and “Away in a Manger” in sign language before learning to sing. Adelia loved reading and coloring with her siblings, playing in the sand, swimming, going for walks, visiting the farm, camping with family, going to children’s museums and parks, annual NICU reunions, family dance parties, and chocolate ice cream.
Adelia faced many challenges in her life and overcame many impossible obstacles. She was a truly unique girl with a chromosome deletion that did not match anyone else in the world. A diagnosis of Aicardi Syndrome brought many uncertainties to her life, yet she overcame them all. Her syndrome often impacts vision, hearing, and speech; yet Adelia learned to read chapter books and hold full conversations. She initially struggled to walk but eventually learned to run, and in 2019 she won a gold medal at the Minnesota Special Olympics state swim meet. Adelia served as Plainview’s 2013-2015 Children’s Miracle Network Ambassador on DQ Miracle Treat Day. She overcame a heart defect that miraculously closed without surgery, one of many “Only God Can” moments in her life. Through the years, Adelia’s therapists at the Mayo Children’s Center became like family as we celebrated each milestone. Her most prized possession is the thousands of “Beads of Courage” that she earned as she tracked her medical journey.
In December 2020 Adelia was diagnosed with myelodysplasia syndrome, a rare bone marrow cancer, but overcame even that obstacle through a fully successful bone marrow transplant. Sadly, the strain on her body was too much, and her last day fully awake was the early morning hours of her 10th birthday. She battled courageously until the very end. Most importantly, Adelia loved unconditionally, treated others kindly, and brightened the lives of everyone she met. Her ten years on earth were a living miracle. Adelia daily embodied the faith, hope, and love of Jesus, in whose arms she is fully healed, forever loved, and eternally rests. She undoubtedly entered heaven with a big smile just as she daily greeted her friends, teachers, and school helpers, excitedly announcing “I’M HERE!”
Now after Adelia's passing, we have made it our mission to be there for other kids and families who face similar challenges, and bringing hope to otherwise dark situations.
What is Aicardi Syndrome?
Aicardi syndrome is a rare neurological disorder comprising a triad of epilepsy, agenesis of the Corpus Callosum which is the tissue that separates the two brain halves, and chorioretinal lunacae which are holes in the back of the eyes.
The Aicardi syndrome Foundation funds research at Baylor University, Texas Children’s Hospital and The University of California, San Francisco.
The Aicardi syndrome Foundation provides a way of connection and support worldwide to families affected by Aicardi syndrome. They host a biennial Aicardi syndrome Family Conference which are attended by families from all over the globe. This gives a unique opportunity for families to learn about Aicardi syndrome through workshops, seminars and discussions of topics of interest which we have attended twice including once as a bereaved “Angel” family.