My husband, Patrick, and I are lucky parents to Colin (6yo), and twin girls, Kellie and Maddie (4yo). My journey with Children's Mercy began professionally in 2016 as a nurse practitioner in the Special Care Clinic. In 2020, our family's journey at Children's Mercy began in the Genetics Clinic when Maddie was diagnosed with Angelman syndrome. We traveled to Mass General's Angelman Syndrome Clinic in Boston following her diagnosis to meet with the expert in this field. We recognized the importance of having this expertise in Kansas City for Maddie and all other children affected by Angelman syndrome. We were fortunate to partner with Dr. Le Pichon in the establishment of the Angelman Syndrome Clinic at CM in late 2022.
As a pediatric health care provider and parent to a child with complex medical needs, I am incredibly proud and honored to be co-chairing the Angelman Syndrome PFAC. I am hopeful for the future of Angelman syndrome through the centralized medical care in the Angelman Syndrome Clinic as well as the ongoing research at Children's Mercy Research Institute. Our family established Maddie's Mission Foundation in 2022 to support the holistic needs of children living with rare diseases, including Angelman syndrome. Maddie's Mission Foundation is honored to support Children's Mercy's continued science, research, and medical progress in the future as we have so much to be hopeful for!