Jist curious how many others here have or have kids with Microphthalmia or PFV?
My 2 year old daughter has both in her eye and wears a #ProstheticEye. She is in all the therapies... physical, occupational, speech, and vision. She also has #Hypotonia.
Let's connnect!
When is comes to Parenting advice, much of it doesn't apply to parents of children with #RareDisease. What are some of those nuggets of advice that people give that they don't realize just doesn't apply to us?
**Your response may be used in an upcoming story on The Mighty on this topic. **
Mine is "They'll just grow out of it." No, my child won't just grow out of needing a prosthetic eye. There is no magical fix for #persistentfetalvasculature or #microphthalmia . We are still trying to find answers for her hypotonia. Growing out of it just isn't possible for her rare conditions. #SpecialNeedsParent #Parenting #RareDiseases
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