Sometimes the biggest personalities come in small packages. This is certainly true for 2019 Miracle Child, Blake Barney. As parents Siobhan and Charles, and sister, Logan know, Blake will stop at nothing to get where she wants, either on all fours or cruising in her gait trainer.
Blake’s neuro-developmental syndrome hasn’t always been identified. In fact, everything about Siobhan’s pregnancy and labor was normal. When Blake didn’t cry at birth, her doctors and parents were immediately concerned. At seven weeks old, she developed a high fever and was admitted to the hospital multiple times for kidney infections. When her parents started noticing developmental delays at four months old, Blake underwent genetic testing and in May of 2018, received the diagnosis of EBF3-HADDS.
EBF3-HADDS is a very rare and newly diagnosed syndrome, discovered in 2016. Symptoms of EBF3-HADDS include low muscle tone, delayed development, impaired coordination, decreased mobility, weakness of the eye muscles, lack of smile and laugh, urological abnormalities, and speech delay. She attends specialized appointments and therapy sessions coordinated by the Special Needs Clinic, a medical home for medically fragile children made possible by Children’s Miracle Network Hospitals. Although there isn’t currently a cure for her condition, Blake continues to impress her family and caregivers with her strong will.
Blake’s family goes about life the same as other families with two small children, except with some unique challenges. There are dolls and ankle stabilizers. Teddy bears and catheters. There are good days and hard ones. When mom, Siobhan needs a brief time to break away to refresh, she knows Blake will be given excellent care by the specially trained staff at the CHRISTUS Trinity Mother Frances Respite Care Program, a multifaceted program for families of children with special needs, made possible by Children’s Miracle Network Hospitals.
Blake loves music, playing with her big sister and balloons! Since studies have only begun on the long term effects of EBF3-HADDS, Blake’s family is taking life one day at a time and enjoying every moment. One thing is certain, Blake will continue to impact those around her with her big personality.
*You can help children like Blake Barney by supporting Children’s Miracle Network Hospitals. One hundred percent of the funds raised locally stay at CHRISTUS Trinity Mother Frances Health System to provide life-saving pediatric equipment and medical services to children in our area.