Anna Leigh’s Treatment

Anna Leigh is a beautiful 4 year old gift from God who brightens the day of everyone she meets. Our baby girl never meets a stranger as she gives sweet hugs (and sometimes kisses) that just warm your heart!

Anna was typically developing until about 13 months. At that point, her progress stopped and in some cases regressed. She was diagnosed with moderate ASD (Autism Spectrum Disorder) at 3 years of age. Anna is currently in therapy including occupational, speech, and behavioral in order to promote progress to her much needed milestones.

Anna Leigh’s neurologist advised to obtain a full genome test for further data regarding her case. The results were more issues…a rare genetic disorder involving the ATP6V0A1 gene. The symptoms can include sensory processing disorders that present as ASD as well as have an impact on cognitive development and seizures that are sometimes not controlled by medicine. Only 21 children are known to have this condition as it was first discovered in 2018.

As of March of 2022, she experienced a rather large seizure that lasted for about 5 minutes with multiple mini-seizures lasting for a few days. While at Wolfson’s Children's Hospital in Jacksonville, FL, she was diagnosed with pachygyria, a condition in which a part of the brain did not fully develop and is thicker than it is supposed to be which can cause seizures as she experienced. She is now on medication to control the seizures. However she had another major seizure in April as well with a sudden drop in blood sugar which is unknown at this time why the sudden drops are happening.

As we researched other medical interventions to help our darling little girl with her symptoms, we found a doctor in Louisiana who has experience with children who present with the same issues as Anna Leigh. The treatment plan is an 8-day regimen which is designed to eradicate seizure symptoms and actually promote cognitive development. Dr. Kyle Daigle has had great success with brain disorders and autism. He is a great Christian man that gives all the glory to God in his success which speaks volumes to us. Because without God we would be useless because this is all a lot to bear and new territory for everyone even Anna’s doctors. Keep us all in your prayers as we navigate through these treatments.

Anna Leigh’s first 8 day treatment is $9500.00 out of pocket just for the treatment. After much prayer and talking with a lot of people we have decided to tell our story and ask you to prayerfully consider donating to Anna’s treatment to do everything we possibly can to help our sweet girl with these horrific seizures and her fears of movement. If not please continue to pray for our sweet girls(both). Allie Kate is doing great. Her tumor on her right optic nerve is stable and has been for a year now!!!!! Thank our sweet Lord above!!!

We know that God is our Hope and our Foundation!!! We believe!