In Support of Frankie Gilman
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Frankie is moving to a palliative stage of care. We would like to give her the best quality life for as long as we are blessed with her. Frankie is 15 years old, our only daughter and oldest of three. She is the lead actress and director in this crazy film we call life. Frankie was diagnosed with Rett Syndrome in 2013 shortly after her fourth birthday, but everyone who knows her, knows Rett does not define the incredible human being that she is. There are people in our lives that we call heroes. Frankie is ours.
She influences everyone that she meets with her ability to love and give love unconditionally; her patience, love, tolerance and strength are unsurpassed. She has a contagious smile and laugh, loves to be outside; especially camping in the mountains or watching the waves crash against a beach. She enjoys being read too, watching Elmo and Spirit Riding Free, listening to music like Coldplay and Pearl Jam and most importantly being a part of everything. Frankie gives the best kisses in the world (we call them tongue’er’ville sandwiches) and loves it when we sing to her. We’re convinced she thinks her name is in every song, since we always change songs to include it.
Frankie is a fashionista and loves bling! She loves soft and comfortable clothing with a flare. Her favorite colors are, yellow, turquoise, purple and pink. We call her our renaissance cowgirl. She loves horses, her dog Jonni (Johny), her crazy brothers (especially when they get in trouble) music and art. She has an art spinner and loves using her switch adapter to create beautiful pieces. She tells us what colors to use on her Tobii eye gaze device then the artist takes the lead. Frankie is an empath, she's intuitive and an old soul. She fully understands her body and what’s going on with it, but doesn’t allow her physical limitations to impede her impact on the world around her. Frankie has Rett Syndrome, but Rett Syndrome doesn’t have Frankie.
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- Created Aug 19, 2024
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- Health Decline
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