Sage was born April 8, 2021, and was a full term healthy little girl until she was about 6 weeks old and started having spasms like movements that we thought were Infantile Spasms.
At 3.5 months old, she had her first EEG. It came back normal, but the day after 4 months old, she had multiple tonic-clonic seizures (grand mal) all day. We had an ER visit and received her first diagnosis of Epilepsy.
A month later, she had her first MRI, which gave us our Bilateral PVNH diagnosis. A month after that, she was officially diagnosed with Infantile Spasms.
Since her first diagnosis, it has been a journey to find more answers and to become more educated in the RARE world we now live in.
At 17 months old, a year from her PVNH diagnosis, she was also diagnosed Aicardi Syndrome, which has been our answer of “why” to all her other disorders. She has had multiple types of seizures and still struggles with multiple seizures daily. This was a world I had no idea about until we were plunged head first into all of it.
The #MarchonPVNH has been an amazing way that I am able to share our story, share Sage’s journey, and bring awareness to these disorders that we now have a close personal relationship with. We have found support, friends, and love in these RARE Disease communities.
Sage brings so much love and joy into our home and has taught us to treasure all the small strides forward. She is our miracle. We we take things a day at a time and have learned to savor these precious moments.
– Catherine, Sage’s mom
#PVNHawareness #MarchOnPVNH #Epilepsy #Epilepsyawareness #Aircardisyndrome #InfantileSpasms
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