|The Story Of Gage
Rochelle and Marc Ramsey anxiously awaited the birth of their second son Gage Riley. He was welcomed with open arms by his 8 year old brother Austin and loving grandparents, aunts, uncles and cousins. Gage was born on November 29, 1999, at 37 weeks gestation, 3 weeks prior to his actual due date. Rochelle's pregnancy was complicated by pre-term labor at 26 weeks, which led to bed rest and at 33 weeks she started the medication Brethine to stop pre-term contractions. Subsequently, Rochelle was forced to refrain from working as a Registered Nurse.
At 1 month of age, Gage experienced repeated rhythmic motions in his left arm and leg. This began their journey on the rocky path the family now follows. Many tests were done resulting in a diagnosis of reflux. They were told his pain and discomfort from reflux could mimic "seizure like" activity in infants. A gastric specialist treated Gage with medication and at 8 weeks of age, during a hospital procedure, seizure activity was noticed. He was officially diagnosed by a neurologist with a seizure disorder.
Rochelle and Marc along with a team of specialists began to explore the unknown cause of the seizures. Even after extensive testing and procedures, no cause could be found. Many medications were tried with no success at controlling the seizures.
The small milestones Gage fought to achieve since birth began to diminish and have not been regained. The family set forth on an expansive search to find answers that led them to Children's Mercy Hospital in Kansas City, Missouri, where a final diagnosis of Infantile Spasms was discovered. At one point Gage was having over 100 seizures a day. Medications were altered and included one not available in the United States. This past July , they sought help from the Mayo Clinic and started the ketogenic diet with favorable results. Gage continues to suffer almost daily from seizures and developmental regression, secondary to Infantile Spasms. Although his seizures have been reduced, this will be a life long battle for Gage and his family. They continue to pray for a miracle hoping for some normalcy in their son's life.
A second diagnosis now confirms a lack of myelin in the brain due to a probable progressive brain disease, type unspecified.
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