Added: 5 months ago
From: akoyshman
Views: 1,134
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  • Aprilalvis2009@gmail.com

  • That was super awesome to see!!!! My grandson is 3 months old and has polymicrogyria and i just needed a little bit of hope. Right now he is so blank when he looks at you and i wait for the day that gets better.

  • Your video of Aaron is so encouraging! A bunch of us parents of kids with PMG have formed a group on facebook called Families Affected by Polymicrogyria. Please join if you'd like! I think Aaron's story would be an inspiration to many.

  • Thank you for responding...:)...my email is my user name (that I use here for You Tube) @aol.com I will look forward to hearing from you. Thank you again!!

  • hi my son 2 and half has exactly the same :) excpet cerbral palsy. may i ask what eye surgery he had?? my son has the same problem but here wherei live they dont know what to do for him?? he also has cataracts in both eyes.

  • @loudnproudmumto1 Hi there, Aaron had eye surgery to corrent his strabismus (eye crossing). The Dr. cut a part of the muscle on the inside of each eye to straighten them out. The surgery was a success, however, when Aaron gets tired, his eyes turn out. The best part was that cortical visual impairment resolved itself, so his vision is perfect. We have an amazing team of Dr.'s and therapists helping him.

  • continued again...methods, therapies, etc., that you all have used to help Aaron come so far. We were so inspired by this video and seeing all that Aaron can do. We have always fought hard for Caius and been his greatest champions...we have never given up on him and try to take things one day at a time...we want the very best for him...we have always had hopes that he would defy the odds because he is so strong. Your video just filled my heart with all the hope in the world. Thank you.

  • @livestrong3c Thank you for the positive feedback, this was my hope when uploading the video. I would very much enjoy talking with you. Our family has been able to help Aaron make such progress by learning from other parents. I am not comfortable posting my e-mail or phone # on youtube. Would you mind posting your e-mail, and I will get notified right away and then remove it. Let me know. Thanks, Allison

  • continued...we were also told that he would never walk, never talk, be severely autistic, have horrible seizures, most likely die because his brain might 'forget' to tell him to breathe, and much more. We were devastated. Just like your little boy, he is a trooper and has fought so hard...he continues to amaze his doctors and defy the odds. I am so interested in your journey and experiences. I would love to contact you personally, via email, phone or whatever means you prefer to discuss the

  • Oh my ....I cannot tell you what seeing this video means to me. I showed it to my husband and we were both in tears. Our son, Caius, is 17 months old and was diagnosed at one day old with BPS. He also has absence septum pellucidum and agensis corpus callosum. He has since been diagnosed with a for of CP. He has had one seizure but has not been diagnosed with epilepsy as of yet. He has had other issues...respiratory and structural problems with his trachea and larynx but those have improved

  • only an amazing mom could create such an amazing human

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