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Evie – PHPV

I wanted to share our story and experiences of discovering that our little girl had something wrong with her eye – a condition called PHPV (Persistent Hyperplastic Primary Vitreous, also known as Persistent Fetal Vascular Syndrome or PFVS). I found I searched the internet until I was blue in the face (not that I think …

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Charlott & Garrett: Bilateral Congenital Cataracts and Glaucoma

Charlotte was born with bilateral congenital cataracts and had her first surgery when she was 13 days old. Her first two years were rough. She had multiple surgeries, didn’t tolerate contacts for very long, and developed glaucoma in both eyes. But since she switched to glasses and her glaucoma stabilized, she’s been doing beautifully. She’s …

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Mirabel – Koolen deVries Syndrome

Mirabel is 21 months old and she has Koolen deVries Syndrome – a microdeletion of part of her 17th chromosome (17q21.31). The syndrome is rare with 1 in 16,000 being born with the condition. Mirabel was born with crossed eyes and has been diagnosed with alternating esotrpia and accomodative esotropia, congential nystagmus, far-sightedness and astigmatism. …

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