Virginia, age 7.   Photo by  Andrea Behrends.

Virginia, age 7.   Photo by Andrea Behrends.

When Virginia was twenty weeks in utero, we learned that she was missing her corpus callosum (the midline structure of the brain).  Doctors and specialists had no explanation for why or how this happened.  They told us that best case scenario, Virginia would have a mild learning disability and worst case, she would be stillborn.  The weeks went by, Virginia continued to grow normally, except for her corpus callosum and twenty weeks later, Virginia came into this world at 7lbs 12oz, full term and seemingly healthy... 

Virginia's seizures started at six weeks of age with infantile spasms.  Shortly after the onset of her seizures, Virginia was diagnosed with Aicardi Syndrome.  Aicardi Syndrome is an extremely rare neurological disorder.  You can read more about Aicardi Syndrome here.  Virginia's main symptoms include intractable epilepsy, total blindness, hypotonia, and global developmental delay.  Basically, she has seizures every day, and is a four month old in a seven year old body.  Virginia does not walk, does not talk, and relies on us to care for all of her needs.  It all sounds pretty bleak, and at times, it has been.  We had no idea where this journey would take us.  We are still coming to terms with Virginia's diagnosis, and what this means for our family. 

 

Saint Virginia is just a regular small business at the moment, we are not a non-profit. 

 
 Virginia with her parents, Leslie and Emil, big sister Porter, and younger brothers Boone and Wally.  Photo by  Andrea Behrends.

Virginia with her parents, Leslie and Emil, big sister Porter, and younger brothers Boone and Wally.  Photo by Andrea Behrends.

We have been blessed to have Virginia for these past seven years, and this girl is growing!  With all this growing, we are beginning to realize that we are going to need to accept our "handicapped lifestyle" and make some big changes.  Until this past October, we had been lifting Virginia in and out of our car, and breaking down her wheelchair every single time we go anywhere.  (She's 46 pounds and the wheelchair is about 75 pounds.)  After much debate, Emil and I decided to search for a wheelchair van, which would mean a car payment (ugh.).  Fortunately we found a used one in Illinois at a great price.  Driving from Tennessee to Illinois to pick up our van,  I was feeling sick to my stomach just thinking how we were going to swing this car payment every month.  Did I mention that all adaptive equipment is ridiculously expensive?!  (This is a whole other topic, which makes my blood boil, so I'll save that for another time - Ha!) My sweet friend offered to set up a crowd funding campaign, and while I am sure we could have raised the money, it was a temporary solution. A solution which Emil and I don't feel comfortable with because our situation will never change.  This is not a tragedy that needs to be overcome (fire, sudden illness, tragic loss, insurmountable medical bills...), this is our wonderful, beautiful and complicated life.   So, Saint Virginia was born.  An honest way to make some extra income.

Saint Virginia is just a regular small business at the moment, we are not a non-profit.   All of the money we generate will go towards our family and growing the business.  I do have dreams of one day spreading the love to other families in our situation, but I need to grow this into something sustainable before we can help others too.  In 2018, with your help, we are going to spread the love and grow Saint Virginia into a movement.  I truly believe that all you need is love (and hard work), and the rest will fall into place. 

xoxo, 

Leslie

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