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.
She got her first pair of glasses (pink Miraflex) at 8.5 months old and had bilateral strabismus surgery around 9 months old. She has been patching since after her surgery.We currently patch her stronger eye for 2 hours per day but we see the ophthalmologist every 4-6 weeks to reevaluate and adjust patching times as needed. Now Mirabel is wearing lavender Miraflex glasses with transition lenses and we love them!
Mirabel receives weekly physical therapy where she is currently working very hard on crawling and strengthening, weekly speech therapy where we are working on her cognition, sign language and picture communication and weekly therapy through our early intervention program. She also periodically sees ENT, audiology, genetics, neurology, ophthalmology and our wonderful pediatrician! Mirabel is an inspiration and a miracle to us. She is brave and a hard worker and we are so very proud of her.
And we CAN NOT wait to see her in her “My glasses give me superpowers” shirt and cape!