About Campbell

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Campbell is a sweet, eleven-year-old girl who loves music that can range from musicals (Hello Dolly is a favorite), Taylor Swift, and her cousin’s (now retired) band, the Hive Robbers. She is also a huge fan of the University of Kentucky Wildcat’s basketball team and watches every game, much to her grandfather’s joy. She has been a blessing to our family, friends and everyone who meets her. Campbell also loves to spend time with her family, especially her cousin and best friend, Bekah.

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Campbell’s Medical History at a glance
  • Born with a bilateral cleft lip and palate
  • 3 weeks old – RSV (Respiratory syncytial virus). Hospitalized for 16 days at the University of Kentucky Children’s Hospital where she was on the ventilator for 5 days. Sent home with a nasogastric feeding tube.
  • 4 months – normal swallow study and was able to go back on oral foods only.
  • 7 months – began receiving early intervention services at home, which included physical, occupational, speech and vision therapy.
  • 12 months – Cortical Vision Impairment (CVI).
  • 13 months – diagnosed with epilepsy after having a primary generalized seizure that lasted 50 minutes.
  • 15 months – diagnosed with cerebral palsy. She was unable to sit independently, non-verbal, non-ambulatory and had hypotonia (low muscle tone).
  • 18 months – began having gastrointestinal issues including Gastroesophageal Reflux Disease (GERD) or more commonly know as acid reflux. She also has chronic constipation and when she gets a stomach virus often has difficulty fighting it without dehydration and/or hospitalization.
  • At 3 years old, she received a gastrostomy tube (G-tube) due to chronic gastrointestinal issues that affected her growth.
  • Around age 5 she began having seizures again. She started having partial seizures as well as the primary generalized seizures she had since she was first diagnosed with epilepsy.
  • May 31, 2012 (6 Years old) – had a seizure that didn’t stop with emergency seizure medicine. Was taken to University of Kentucky Children’s Hospital ER where she coded twice and was given CPR for 20 minutes. The doctors didn’t think she would survive but they finally revived her. She was in critical condition, in a coma and on life support for 5 days. From that episode, she did have hypoxic brain damage and is now more of a classic case of cerebral palsy. She also has spasticity (increased muscle tone), postural issues such as scoliosis that requires bracing and dislocated hips.
  • At age 8, she was diagnosed with central sleep apnea and uses oxygen at night.
  • At age 9, she was diagnosed with osteoporosis and began bone density treatments.
Campbell has been evaluated by genetics since birth to determine if her symptoms are a part of a genetic syndrome. She has had bilateral cleft lip and palate repairs at the University of Kentucky Children’s Hospital. However, her primary specialists are at the Cincinnati Children’s Hospital Medical Center. Although she has been through more than most eleven-year-old girls, she is strong and continues to amaze us every single day.  Update:  In October of 2016, Campbell was finally diagnosed with Bohring-Opitz Syndrome through Whole Exome Sequencing.