Come Rain or Come Shine

By Kim Meyer-Webb | Photography by Meredith Melody

Hair by Amy Hester with Red Beauty Lounge | Makeup by Susy Melendez with Red Beauty Lounge

   Sara Beth Hughes wears a charm necklace that reflects her constant adoration of her two children and shares milestones + happy memories at every encounter. Like other members of the Arkansas Children’s Hospital Auxiliary and many mothers, she believes in the hospital’s vision to create a healthier future for all children. Next month, Sara Beth will welcome guests to Arkansas a la Carte with a pledge to “fund research and create spaces to heal sick kids and care for their families.” Her family has been impacted by this steadfast commitment to the ACH mission. However, her testament and unwavering devotion to the hospital’s talented team and services come from an experience of immeasurable heartache.

   Sara Beth and her husband Bradley were introduced to ACH when their pediatrician ordered an X-ray at the hospital for their daughter Lila Beth – who was born in 2010 and just 10 months old. Through a seemingly routine well-child visit, the results initially indicated scoliosis as the probable cause for the curvature in Lila Beth’s spine. Further X-rays and examinations determined a grave conclusion. “My seemingly perfect healthy 10 month old baby girl was diagnosed with a terminal disease. In one afternoon, my entire world flipped completely upside down by a disorder called Mucopolysaccharidosis,” Sara Beth remembers.

   Treatments for the hospital’s most arduous patients are not confined to the ACH campus. Mucopolysaccharidosis is a rare metabolic disease that does not currently have a cure. “We were part of a unique collaboration and realized that the Arkansas Children’s Hospital team will find the right place and right people to help every patient.”  Arkansas Children’s Hospital coordinated with the University of Minnesota Children’s Hospital to enroll Lila Beth in a clinical trial. Despite chemotherapy, a bone marrow transplant and several surgeries – Lila Beth developed critical complications. “I held my daughter as she drew her last breath inside Arkansas Children’s Hospital. I left that building without her… and I’m not okay with that,” Sara Beth proclaims. “So until that building isn’t filled with sick kids, we have work to do.”

   As chairman of this year’s Arkansas a la Carte, Sara Beth draws from her family’s ACH journey for inspiration. “I’ve described it as a terrible storm or natural disaster. Like when you watch news coverage of a storm – all the flooded streets, the destruction and the people who have lost everything. But soon, the coverage shifts to the beautiful things that can happen after the storm… lots of people helping people through the recovery…  And we saw so much of that type of beauty throughout our journey.” With an atmosphere that serves as a reminder of our beautiful world filled with beautiful people, Come Rain or Come Shine will showcase more than 20 local restaurants featuring light bites and lively libations. The evening will celebrate “how Lila Beth lived each day with such light and joy. And come rain or come shine, the auxiliary will continue its work to support the Arkansas Children’s Hospital services and research that my family received.”

Inviting Arkansas

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