Valorie: Cockayne syndrome

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 sensitivity 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.


Microcephaly. He also had a severe sensitivity 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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