Andi's Story (UPDATED 7/1/26) We hope to use this page to keep everyone informed about our sweet Andi girl. I'll try to have each post include a general update, with a more specific medical section at the bottom, when appropriate. Sweet Andi was born in December 2025 in Mississippi, where we have been while I completed a one year orthopedic fellowship. After a (relatively) uneventful c-section, we brought her home to her adoring brother, Elliott with a clean bill of health. Her checkups were all normal and we had no suspicion or indication of having anything other than a healthy baby girl. At 4 months, she became progressively irritable. We assumed she had a bad case of colic, but by May (5 months) no such improvement was apparent. She continued to fall behind in motor milestones and persisted with poor head and neck control. After a 3 week workup that included multiple specialists, several blood draws, a hospitalization and a sedated MRI, our sweet Andi girl was diagnosed with Krabbe disease: a rare genetic/neurodegenerative condition. Unfortunately at the time of her diagnosis (~6 months) there is no curative therapy, and comfort care is the only treatment option at this time. We have, of course, been devastated by the diagnosis. Having already lost our Ellie girl 5 years ago to a separate (and completely unrelated) genetic disease, we never would have imagined ourselves back in such a similar position. We know that God is ultimately sovereign, and works all things for our good. Yet we find ourselves in the difficult position of reconciling these two truths, in a time that does not feel good. We continue to pray for miraculous healing; as well as the strength to carry on if He answers otherwise. We know that sweet Andi is being prayed for by so many of you, and we thank you and pray along side! -Steven Andi's Story ( OLD -- 6/10/26) We hope to use this page to keep everyone informed about our sweet Andi girl. I'll try to have each post include a general update, with a more specific medical section at the bottom, when appropriate. Sweet Andi was born in December 2025 in Mississippi, where we have been while I completed a one year orthopedic fellowship. After a (relatively) uneventful c-section, we brought her home to her adoring brother, Elliott with a clean bill of health. Her checkups were all normal and we had no suspicion or indication of having anything other than a healthy baby girl. At 4 months, she became progressively irritable. We assumed she had a bad case of colic, but by May (5 months) no such improvement was apparent. Both her aunt (a pediatrician) and grandfather (family physician) observed her and became concerned at her level of irritability and recommended having her pediatrician assess her. Andi was beginning to fall behind in her motor milestones, particularly with poor head and neck control. Shortly thereafter we saw her pediatrician, who was concerned and recommended urgent neurology evaluation. By a series of events attributable only to the mercies of God, we were in with a pediatric neurologist 2 days later. After his assessment, he was quite concerned and admitted us to the hospital that same day with plans for a brain MRI and genetics consultation, which we underwent last Thursday/Friday. While the MRI was actually read as normal, there remains significant concern for a rare genetic condition known as Krabbe disease, a fatal genetic and neurodegenerative disease when diagnosed after symptoms have already developed. Her DNA was sent off for genetic evaluation, as well as a large series of blood work. We were discharged from the hospital and returned home last Friday. Lydia's entire family was able to travel to MS to spend time with us last week and into this week as we have waited on test results. Our families, home church in MS, as well as our past church homes in Columbus OH and Elizabethton TN have reached out to us with so much prayer and love. We know that sweet Andi is being prayed for by so many of you, and we thank you and pray along side you for healing! -Steven Physician's Corner -Andi progressively became more irritable after 4 months, had progressive axial hypotonia with appendicular hypertonia, an exaggerated startle reflex, clasped thumbs, feeding difficulties, and loss of lower extremity deep tendon reflexes, all significantly concerning for a diagnosis of early-infantile Krabbe disease. Krabbe disease is a nerve demylenating disease, with the early onset forms being fatal within 2 years without early (within 30 days of birth) treatment by bone marrow or umbilical blood transplant. While rare, it is estimated that about 1 in ~150 are carriers for the disease. Unfortunately, at the time of Andi's birth, the state of Mississippi was not screening for Krabbe dx (though it reportedly is now. States that do screen are TN, OH, IL, IN, PA and several others). Andi's initial MRI and MR spectroscopy were read as normal, but these can be difficult to read in infant brains given the amount of neurodevelopment within the first year of life and do not, unfortunately, rule out the possibility of Krabbe disease. Bloodwork to date has been relatively normal, there have not been any signs of an amino acid disease or a fat metabolism or other metabolic type disease. Lydia and I have no known family hx of krabbe dx. We are awaiting the results of Andi's whole genome analysis and enzymatic testing of her GALC enzyme activity to confirm Krabbe, or to point us in a different direction if normal. Some form of Leukodystrophy (of which Krabbe is one type) seems to be the most likely diagnosis at this point.