Livia Grace

Livia's Story

Oh my, where do I begin?  Look at that cute, dolled up little girl.  That's our Livia.  She is literally the most energetic, kind, courageous, humble, silly and passionate little girl.  For 8 years old, she had more soul about her and more empathy than most adults I have ever met.  

Livia was 8 years old and loved anything that had diamonds, bling or cheetah print.  Yes, cheetah print. If it sparkled, if it was beautiful, she loved it!  Livia had the most amazing head of strawberry blonde hair.  It was so thick, and wavy, it was absolutely gorgeous.  She had beautiful blue eyes, a precious smile and a birthmark on the front of her neck.  We called it "God's Kiss".  She knew she was special for that .  She was our dog whisperer and loved our dog more than anything!  We had just gotten our puppy a few months prior and she wanted to not only be his new "mommy", but she wanted to make sure he had a great life.
I know this sounds cliché, but it is true.  From the time Liv was born, she didn't ask for much.  She was such an easygoing little girl most of the time.  She never begged for a toy while at the store, if you told her NO, she wouldn't argue.  She just "got it".  She had a favorite saying: "You get what you get, and you don't throw a fit".  She loved so many things and she enjoyed everything she put her mind to.  She was just learning how to sew by hand, she was just starting to read her first chapter book, and she just started writing in her journal.  Livia tried gymnastics but didn't like it.  She tried clogging, but was too embarrassed to perform.  Finally, Livia joined Daisies, and from that moment she put on that royal blue vest, she was hooked!  One year later, she became a Brownie and had the most fun I think I have ever seen this girl have.  Oh did she giggle when she was there.  She loved volunteering at the pet shelter, giving back to the needy and doing anything she could to do something good for others.  She learned so much and we knew, that this was for her.  She passed away before she could bridge over to becoming a girl scout, but her amazing troop included her anyway, and still include her in their troop conversations.  Bless Them.

Liv looked up to Mason like I can't even explain.  She idolized everything he did.  She wanted to be around him, play with him or just be near him at all times when she was younger.  Sure, we had the sibling arguments and tattling, but for the most part, they loved each other so much it was truly a gift.  They also both had Cystinosis and together, they were quite a force to be reckoned with.  They were not going to let it keep them down, so they fought hard against it, with each other on their side.  

After only 12 days of being a 3rd grader, Livia suddenly left this earth.  She left us, just like that.  Cystinosis didn't take her, but a different force did.  Fibromuscular Dysplasia took our little girl from us.  Another very rare disorder, one in which we were not aware of, took Liv and had no mercy.  

That perfect smile, that head of hair, the love and pure joy that Livia brought to our family, will never be forgotten.  We want everyone to learn from Liv, and how she lived her life and we as well, plan on making Livie proud.

Livgracefully is dedicated to keep Livia's memory alive, but it is also dedicated to someday helping to find a cure (through donations) for not only Cystinosis, but FMD.  Livia's life will never be forgotten, and we hope someday, we are able to change the way these diseases are diagnosed, treated and one day-- cured.