Alex, Kasey, Dawson, and Lukas
Podcast Episode Show Notes
A Greater Plan
God’s greater plans are beyond our full comprehension. He is above all and in all. In every circumstance, in every trail, in every broken piece – He is there orchestrating every detail. When God writes your story, there’s not a chapter that’s missing.
In today’s episode, Kasey shares her story of the pain and tragedy she experienced when her son was diagnosed with a fatal disease and later passed away. But she also shares her greater hope – that God is using her pain for a greater purpose. And He will use yours too.
Learn more about our Podcast, Episode Guests and Hunter’s Hope here.
Featuring
Kasey Feldt
Kasey is married to her high school sweetheart, Alex. They have two sons, Dawson and Lukas, and two dogs, Willow and Jenna. Kasey works for Sisters’ Hope Foundation as a Virtual Assistant helping patients diagnosed with ALSP and is a social media coordinator for Librarey.
Alex is the Clinical Director and Physical Therapist for Athletico Physical Therapy. Kasey also advocates for families affected with Krabbe Disease and fights to get Krabbe Disease added to the Newborn Screening Panel for Virginia.
On July 16, 2019, Alex and Kasey Feldt welcomed a perfect baby boy, Dawson Luke Feldt. He was beautiful, strong, and everything they had dreamed of. They had 3 perfect months of smiles, babbles, and a couple laughs until Dawson got sick for the first time. They noticed he never gained head control and wasn’t drinking the amount he was before. By the time he finished drinking his formula, he would throw it all up. Even though Alex and Kasey did not want to believe something was wrong with Dawson, they consulted with a neurologist. While conducting tests for months to find answers, he started having spasms which caused incredible nerve pain and was rapidly losing weight. After a weeklong hospital stay, Alex and Kasey heard the news that Dawson has Krabbe Disease. His neurologist described the horrors of the disease, and that the life expectancy would only be two years old. Devastation does not begin to describe how they felt.
They knew they had to act fast to make Dawson as comfortable as possible. In the matter of a month they went to UPMC twice, first to meet Dr. Escolar and second to have Dawson’s G-Tube and Nissan surgery. After that, their lives revolved around medicine and feeding schedules, medical equipment, learning about the disease, and spending quality time with Dawson. Plus, they were navigating the start of the COVID-19 pandemic.
We took multiple family pictures, spent time in our pool, took him to the zoo, and spent every weekend with family members and friends. We tried to keep him happy and comfortable, and we soaked up every snuggle we possibly could. He loved watching Baby Shark and Mickey Mouse Clubhouse. Even though he was non-verbal, he had a strong personality. He would roll his eyes when he was annoyed, and his eyes lit up when he was happy.
He passed away peacefully on November 8, 2020, with Alex and Kasey by his side. He is missed terribly but he is in a better place where he can do all the things he couldn’t do on Earth. He is our true Guardian Angel.
Alex and Kasey recently had a new baby boy, Lukas Scott Feldt, named after his brother. Thankfully, he is completely Krabbe free and he is a true blessing. Even though Dawson could never be replaced, we know he sent Lukas to Alex and Kasey from Heaven.
About the Disease
Krabbe is one of many diseases in a disease family called Leukodystrophies. Learn more about Leukodystrophies here.
Learn more about Krabbe Disease here.
About Newborn Screening
Learn more about how early detection through Newborn Screening saves lives.