Update: On November 13, 2020, just 5 short months after her initial diagnosis, sweet Lucy grew the most glittery, sparkly rainbow, beautiful angel wings that there ever has been. In the words of Lucy’s mom, Raegen, “Our hearts are shattered into infinite pieces, but we find comfort knowing that she is no longer suffering. Lucy’s battle may be over, but our war against DIPG wages on with fury.”
Lucy Sieck #TeamLucyLove
Lucy is a bright, talented 6-year-old from Pfafftown, North Carolina. She loves basketball, unicorns, and all things glittery. While the world was reeling from the COVID-19 pandemic, the Sieck family received the most devastating news imaginable to a parent. On May 21, 2020, Lucy was diagnosed with DIPG.
How Team Lucy Became a ChadTough Family Partner
Immediately upon diagnosis, Lucy’s doctor sought out current clinical trials for which Lucy was eligible. He began reaching out to doctors around the country, preparing a list of options for the family. Lucy’s parents, Brian and Raegen, were prepared to try anything and everything to save their child and agreed that a clinical trial was their best option. After researching the detailed list that Lucy’s doctor had provided them, the Siecks decided to pursue the trial being offered by Dr. Carl Koschmann of Michigan Medicine.
Dr. Koschmann connected Brian and Raegen with Tammi Carr. Within days, Tammi helped the family find a house that they could move into for the summer while Lucy undergoes her 10-week trial.
“Knowing how strong and familiar The ChadTough Foundation is in Michigan, we are honored to bring that strength with us back home to North Carolina, to spread the word about DIPG,” said Raegen. “Together, we will keep fighting, keep educating, and keep raising funds to cure DIPG!”
For the Siecks, the fact that there was a trial being offered in Ann Arbor, Michigan, felt like a positive sign. Raegen was born in Michigan, and her sister Jill lives less than an hour away in Royal Oak. Through Jill, there would be many medical contacts and resources to help them navigate their journey.
“The bad days are soul crushing, but those rare moments of her laughter bring explosions of joy,” said Raegen. “The support we’ve received is living, breathing proof that there is a lot of good in the world.”