Join Us in Giving Adaline a Brighter Future

Straight and Narrow is seeking your support to help provide resources for little Adaline Arbuckle. Read Adaline's story written by her parents and support as you’re able. We here at Straight and Narrow appreciate you and we know her family does as well.

Adaline was born with a rare disease called Tuberous Sclerosis complex (TSC). TSC causes non-cancerous tumors to grow in vital organs. Adaline has them in her heart and brain. The one in her heart led her to have Wolff-Parkinson-White syndrome, which causes her to have a rapid heartbeat. The ones in her brain have caused her to have infantile spasms and seizures. She has to be on 5 different medicines that are taken multiple times daily to control these conditions. We have annual and 6-month follow-ups for her that include MRIs, EEGs, heart monitoring, along with other various tests. Most of these appointments are at Children’s Mercy in Kansas City so we have to travel to them. Last year, 2024, she had numerous seizures with most of them leading to her being flown to either Wesley in Wichita, Ks or to Children’s Mercy in Kansas City. Due to the unpredictable nature of her seizures we moved from our small town to the Wichita, Ks area so we can be closer to emergency care and try to reduce the length of her seizures. Adaline’s seizures can last up to an hour and then she has to be intubated. So by reducing the seizure length she has a better opportunity of not having to be intubated and reducing her overall time in the hospital. We have made a trip to Houston to get a second opinion on Adaline and have more treatment options for her if/when needed. Also we just found out Adaline’s main TSC doctor at Children’s Mercy will be leaving, and they have no replacement. This will leave us without a specialist in state and we have started looking at out of state options for her yearly care. She is an amazing little girl who brings smiles on everybody’s faces. We will continue to seek the best care for her and do whatever it takes to make sure she lives the best life possible.