Seizure Disorder

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Sandra: ADNP syndrome

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After Sandra’s twins were born, they noticed one of the twins, Tony, wasn’t developing typically. Through testing, they discovered several brain abnormalities, heart abnormalities, vision, behavioral, feeding, and many more complications. Sandra’s genetic team told her it was unique to Tony- but Sandra thought differently. Tony went undiagnosed until he was six years old- but through some major research and dedication from Sandra, she found a genetic research study, and Tony was subsequently diagnosed with ADNP syndrome.

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Kaitlin: Chromosome Deletion, CHD, Neurological Differences

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Kaitlin had an average pregnancy, and delivery. Shorty after Mason was born, Kaitlin was told by doctors that he had “dysmorphic features.” He has a deletion of two separate chromosomes, a congenital heart defect, congestive heart failure, microcephaly, auditory neuropathy and many others. Despite the challenges, he is the light of his family’s life.

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Connie: Cerebral Palsy, Cognitive Impairment and Seizure Disorder

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Connie tell us what is was like raising her daughter, Farah, who has Cerebral Palsy, a cognitive impairment, and a seizure disorder. who is total care- meaning someone needs to feed, bathe, and clothe her. She open up about the joys and challenges she faced raising a special needs daughter. Connie was told for the first 5 years of Farah’s life to place her in an institution, but Connie refused. Farah is now 41 years old, and has remained at home with her family all of her life.

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Katie: Congenital Nephrotic Syndrome and Undiagnosed Seizure Disorder

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At 8 weeks old Katie and Eric’s daughter Emerson developed a fever, so they took her to the emergency room. Once at the E.R., they were told there was something critically wrong with Emmerson and they admitted her. After a week of testing, Emmerson was diagnosed with Congenital Nephrotic Syndrome– end stage renal disease-which is a rare genetic issue. Emerson receives 24 hour care, and does dialysis everyday. Once Emerson is big enough, she will go through a series of testing in hopes of getting a kidney transplant.

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Congenital Nephrotic Syndrome- end stage renal disease-which is a rare genetic issue. Emerson receives 24 hour care, and does dialysis everyday. Once Emerson is big enough, she will go through a series of testing in hopes of getting a kidney transplant.">

Posted October 2017 under Congenital Nephrotic Syndrome, Seizure Disorder, Transplant.

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