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Ryli Marie O'Hara

Born February 19^th, 2004

Ryli was born February 19, 2004 - just after 8:00 pm. She was a small but healthy 5 lb. 10 oz. beautiful big brown eyed girl.

She started seizures at 3 months of age called Infantile Spasms (West Syndrome). Ryli was tested for Genetic Disorders, Metabolic Disorders and many diseases since Infantile Spasms is typically brought on by something else going on. Ryli's MRI's and Ctscans showed nothing but a healthy perfect brain of a 3 month old. Ryli was started on an 8 week round of ACTH (corticotropin) which is a Steroid shot given IM (Intramuscularly) daily. After the ACTH was completed, Ryli had a follow up CT scan showing Atrophy of the Brain (shrinking and thinned out tissue of the brain) and Subdural Hematomas (bleeding).

Ryli has an Undiagnosed Neurological Disorder. We can say that there were a few things that we noticed and pointed out to her doctors before things started happening at 3 months. She was born with an overbite and two teeth buds at the top which went away with time. She was also born with bilateral hip dislocations. If you moved to fast, she could not find you. She never liked tummy time and could never pick her head up.

She cannot hold her head, sit, roll, suck, swallow, cry , smile or track with her eyes. At 19 months of age, Ryli started to give a smile or two a day and at times, a little giggle. Ryli is continuously hospitalized and even intubated 3 times due to her lungs being filled with her salivations and/or Collapsed Lungs since she cannot swallow. Ryli had surgery New Year's Eve 2004 for a Gtube. This happened due to repeated hospitalizations of aspirated pneumonias. They wrapped Ryli's stomach around her esophagus so she could not throw up and aspirate that, that procedure came along with the Gtube and is called a Nissen. Then only 2 days after her 1^st birthday, Ryli underwent ENT surgery. She had nerves cut behind her eardrums, tonsils taken out, and adnoidectomy and had her sinuses enlarged all to help her salivate less since now that she was aspirating her salivations.

Ryli has an Airway Clearance Vest, and received her Tracheotomy October 27, 2005, which is definitely helping to keep her lungs pretty clear. In August 2007, Ryli had her spinal surgery. Since Ryli does not sit or stand, she has developed Neuromuscular Scoliosis. Her spine curves 77 degrees so they placed 2 bars along her spine. She will under-go approximately 3 spinal surgeries per year to make growth adjustments on the bars and then to replace the entire kit yearly. This will continue until she is about 10 years of age and at that point, they will fuse her spine. They can't fuse it now as her organs need room to grow so her torso needs to be long enough for her organs to mature. May 2008 Ryli had bilateral femoral varus derotational osteotomies and bilateral iliopsoas (VDRO) of her hips and will have the hardware removed approx May 2009. Ryli has profound global developmental delays.

We hope to be able to uncover what is wrong with Ryli so that we will be able to make medical decisions and help her have a healthy, happy life.

 

Welcome to Ryli's Hope. This is her story.