Developmental Delay

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Most Recent Stories

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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Nicole- Single Gene Mutation

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While pregnant, Nicole receive a pretty grim diagnosis for her unborn son, Jacob. Doctors found a cyst on his brain, and other abnormal development. Nicole did not think she would be able to carry Jacob to term, but through a second and third opinion, they were given more positive news and gained more hope. Jacob spent the majority of his first year in the hospital, and was diagnosed with Tracheomalacia, an abnormal brain stem, and a single gene mutation- that no one else in the world has been diagnosed with.

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Kayla and Josh: ADNP syndrome

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Kayla and Josh started realizing that their son Parker was falling behind in his development. They went to a geneticist, and through genetic testing Parker was diagnosed with ADNP syndrome- a genetic mutation which can include developmental delays, Autism, and distinct facial features. At the time, he was the 85th person to have been diagnosed in the world. Kayla and Josh open up about the joys and sorrows they have experienced raising Parker, and how they feel blessed they were chosen to raise him.

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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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Will-Sibling: 3 Siblings with Disabilities

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Will has 3 siblings, all of whom have a disability. His sister, Heidi, has Down syndrome; and is brothers Barrett and Fritz have Autism.

Will opens up about how it’s been being their sibling.

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Alyssa and Ben: Aplasia Cutis Congenita

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Alyssa was 5 months pregnant with their baby Will, when she was told he had some complications. A specialist, who thought that it was Encephalocele, told Alyssa and Ben that that Will had a less than one percent chance of surviving until birth. And if he did, he would have no quality of life.

Will is now 1 year old, and has been diagnosed with  Aplasia Cutis Congenita, and a developmental delay.

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