Miley's Care Fund

Miley is 14 years old and suffers from a severe form of congenital scoliosis. While most children with this condition aren't diagnosed until after birth due to difficulty detecting spinal curvature through ultrasound, Miley was diagnosed in utero due to the nearly 90-degree curve in her spine present and visible through ultrasound at approximately 24 weeks gestation.

A child with two affected vertebrae is considered an extreme case of congential scoliosis; Miley was born with five affected vertebrae in addition to two fused ribs, only one fully functioning lung with the other functioning at approximately 5%, and esophageal sphincter dysfunction which lead to severe chronic GERD. Due to difficulty swallowing and frequent vomiting caused by her esophageal disorder, Miley had a gastrostomy feeding tube (G-tube) surgically placed into her abdomen at age 18 months; she remains significanlty underweight despite receiving daily tube feedings.

Miley underwent her first spinal surgery at age three years; during this procedure, hardware that must be surgically adjusted every six months to account for her growth was implanted in her spine. Following her fourth spinal surgery in September, 2013, Miley's surgical wound became extremely infected, requiring two hospitalizations and long-term IV antibiotics.  In 2016, she underwent a halo surgery after which she remained hospitalized for six weeks while she wore exterior hardware.  Immediately following that hospitalization, she was transferred to a larger hospital where she had an additional spinal surgery.

Miley's condition is expected to require multiple additional surgeries and extensive, life-long medical care.  Funds raised will help ensure that Miley has continued access to the life-saving medical treatment her condition requires and financial security for her future.