It was one year ago today, April 24, 2019, that Virginia lost the ability to see out of her left eye. One year ago today, I was teaching at school, and Virginia came up to me and said, "Mom, I can't see out of my left eye!" Little did we know what was to come, but it has been a tough journey, and one we could have never foreseen. We are still learning and evolving with this rare disease called, MOG, and it is amazing to see what all our sweet girl has been through in a year.
She now has a port in her chest for her infusions of IVIG. She has to have infusions of IVIG every four weeks. This is her current treatment after her first treatment, Celcpept, failed. She lost the ability to walk for over a month, and this medication was what brought back her ability to walk. She still struggles with fatigue, pressure in her chest that feels like she is being squeezed with a big hug, and she has not regained her vision, and she may never get it back.
As her parents, we can't help but watch her constantly and wonder when her next attack will be. We do our best to keep her life as normal as possible, but it just isn't normal. We will continue to share her journey. Her can find more updates on her Facebook. She wants everyone to know about this disease, and she wants to bring all the awareness she can. We know this girl is going to change the world, and we sure are proud to join her on the journey!
At the moment, we are fully quarantined in our home. We do have to leave for her treatments, but that is really it. This pandemic has made us even more aware of how life really can change in an instant, and we take nothing for granted. Please stay safe with your families, and remember to spread kindness any chance you get!
Virginia has so much love for Gus the therapy dog. He has made her hospital stays so much easier!
She now has a port in her chest for her infusions of IVIG. She has to have infusions of IVIG every four weeks. This is her current treatment after her first treatment, Celcpept, failed. She lost the ability to walk for over a month, and this medication was what brought back her ability to walk. She still struggles with fatigue, pressure in her chest that feels like she is being squeezed with a big hug, and she has not regained her vision, and she may never get it back.
As her parents, we can't help but watch her constantly and wonder when her next attack will be. We do our best to keep her life as normal as possible, but it just isn't normal. We will continue to share her journey. Her can find more updates on her Facebook. She wants everyone to know about this disease, and she wants to bring all the awareness she can. We know this girl is going to change the world, and we sure are proud to join her on the journey!
At the moment, we are fully quarantined in our home. We do have to leave for her treatments, but that is really it. This pandemic has made us even more aware of how life really can change in an instant, and we take nothing for granted. Please stay safe with your families, and remember to spread kindness any chance you get!
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