Ezra Marie— Fearfully & Wonderfully Made

Ezra Marie Williams had her first seizure on June 30, 2022. She was admitted to Wolfson’s Children’s Hospital in Jacksonville, FL where she was diagnosed with Epilepsy. After getting back home they met with an amazing epileptologist who ran genetic testing. On Friday, August 26, 2022 Ezra had a 6:30 minute seizure that landed them at Scottish Rite for overnight observation. Also on 8/26/22 Jeremy and Heather got the news from Ezra’s genetic testing that she had a mutation in the X chromosome, CDKL5. CDKL5 deficiency disorder is a rare X-linked genetic disorder first identified in 2004. Most people affected by a CDD have seizures that begin within the first months of life. Problems with the baby’s development then occur, leading to severe developmental delay. On Monday, August 29 they met with their epileptologist. They were informed that a referral had been made to a pediatric ophthalmologist and a geneticist. They were also told that there are only 6 hospitals in the nation that study CDLK5 and that they needed to contact the Boston Children’s CDKL5 Clinic for an appointment as soon as possible. Ezra will also begin intensive physical, occupational and speech therapy as soon as possible.

Psalm 139:14– I praise you, for I am fearfully and wonderfully made.

Before this sweet princess was ever born, God already knew the life Ezra would live. We know and believe 110% that God created Ezra with this disorder for a reason and He has big plans for her life!!!!

As a community, we need to help the Williams family!!! Not only with all the medical bills that will soon start, Ezra will need all sorts of therapy… not only that, but gas prices are extreme commuting from Villa Rica to Scottish Rite, but they will also be making frequent trips to Boston.

Keep Ezra in your prayers daily! Pray for understanding for Heather and Jeremy as they learn a new way of life, and guidance on how to cope and teach this new life to sweet Evan!!! Evan loves his sissy, and though she may be different, she is still going to do great things!!!!