Microcephaly

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Valorie: Cockayne syndrome

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Valorie’s son Jace was a typical infant. Around 12 months, his head measurements were falling behind, and he was diagnosed with Microcephaly. He also had a severe sensativity to the sun. Hearing there was a correlation with the two, Valorie sent a skin biopsy to a specialist in England who was able to confirm that Jace had Cockayne syndrome. Valorie had to push doctors and insurance companies to get the procedures and care that Jace needed. Valorie learned to become a fierce advocate for Jace.

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Angie: Stromme syndrome

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During Angie’s first prenatal ultrasound, Doctor’s found her baby Ruby wasn’t developing properly. After Ruby was born doctor’s found Ruby had Microcephaly, vision impairment, and a bowl obstruction.

Ruby has been diagnosed with Stromme syndrome, which is so rare, that her condition did not get a name until she was 11 years old.

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Ileana and Lorenzo: Microcephaly and Cerebral Palsy

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During Ileana’s 20 week ultrasound, doctors discovered her baby girl, Giselle had ventriculomegaly. Ileana and her husband Lorenzo were offered termination as an option, but they decided to continue with the pregnancy.

Giselle, was diagnosed with Microcephaly as a young baby. She is now 3 years old and was recently diagnosed with Cerebral Palsy.

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Gwen: Microcephaly, Asparagine synthetase deficiency or ASNS, Dwarfism, Cerebral Palsy, Epilepsy

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Through Gwen’s second pregnancy, all tests came back normal and she went full term with her baby. After she was born,  her daughter was diagnosed with Asparagine synthetase deficiency– which includes Microcephaly and Epilepsy– as well as DwarfismCortical Visual Impairment, and Cerebral Palsy.

When she was pregnant with her third child, doctors discovered her unborn baby would be born with the same diagnoses.

Gwen opens up about what it has been like raising two profoundly affected children.

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