7/7/2024-
Kelli has been fighting a journey since birth not always easy but we have made it to 15 years old. The day after Kelli was born she was being placed for her hospital photo when she stopped breathing. In that moment a nurse comes in and tells me to pull the code blue. Kelli is my first and to see nine nurses run in grab her and run out my heart sank. The doctors didn’t know what caused her to have this episode and we were placed in NICU then a Special Care Unit. When we were discharged and we followed up with her pediatrician we still didn’t have answers. Her pediatrician had a computer print out on VLCAD and told us “in case she has this follow these steps but I’ve never heard of it!” A month later we followed up with her geneticist and it was confirmed that she has Very Long Chain Acyl-CoA Dehydrogenase Deficiency with the gene mutation of a zebra fish. Her first year we had 25 hospitalizations not knowing day to day what the next day would bring. Kelli to this day has had 79 hospitalizations not including ER visits. She also has hemolytic anemia, PTSD, ADHD, and waiting on results for Gilbert’s Syndrome now. She is my fighter and inspiration because all of this hasn’t stopped her as she continues to amaze us all.
Kelli lately has enjoyed hunting and fishing. She currently has a ram mount, turkey mount and the port they took out of her chest in her room. Definitely a sense of humor with her and I love watching her grow. She loves dancing and singing. She has performed in front of LSU students through Dance Marathon at LSU raising money for Our Lady of the Lake Children’s Hospital. She has also gotten into theatre performing in The Jungle Book, Mary Poppins Jr, The Little Mermaid, and a week after surgery she performed in Aladdin Jr.
The message Kelli wants other kids to know that are fighting is anything is possible as long as you believe in yourself. We do have extra things we have to do for her to do these things such as hydrate more and eat more often. VLCAD she can’t fast but also her food doesn’t stick and turn to energy like it does for us. This means the more active she is the more she has to eat. We are truly blessed that in that the first seven years she had 69 hospitalizations and these last eight years she only had ten! Take one day at a time is all we can do but we’ve got this and so do you!
