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      Heroes Who Inspire All of Us

      Eye-Dorable Taylor: Eyepatch Activist and Brain Tumor Survivor

      Eye-Dorable Taylor: Eyepatch Activist and Brain Tumor Survivor

      "At 13 I had a brain tumor. During surgery, I had a stroke and severed my optic nerve. I am now forced to wear an eyepatch. Most of the media's representation of eyepatches are to portray a villainous character or pirate and having that as our representation is completely unfair. We deserve a POSITIVE representation in the media so I started an Instagram called @eyedorabletaylor. I started this Instagram because I wanted to show that even a girl in an eyepatch can be beautiful, especially for those who also wear an eyepatch. I want to change perceptions on eyepatches as a whole and change the world." We commend you Dora for being true to who you are - the eyepatch does not define you, your positivity and bravery does! Martin Luther King Jr. once said, "Our lives begin to end the day we become silent about things that matter", and we will never be silent!

      Jono Lancaster - Overcoming his Treacher Collins Syndrome and Inspiring Others / Treacher Collins Syndrome

      Jono Lancaster - Overcoming his Treacher Collins Syndrome and Inspiring Others / Treacher Collins Syndrome

      This is Jono Lancaster - you may have heard of him and his inspiring story as he shares love and encouragement world-wide through his charity, Love Me, Love My Face. Jono's charity raises awareness for Treacher Collins syndrome and Craniofacial conditions, as well as supporting families and educating individuals and the public. Jono was diagnosed with Treacher Collins syndrome when he was a baby. Treacher Collins syndrome is a genetic disorder that affects the development of the bones of the baby while still in utero. Jono was adopted when he was younger and grew through his struggles to help others - instead of allowing them to defeat him. Jono is a hero that inspires many with his love and message, Fenrici included! Thank you Jono for allowing us to share your story!

      Wynter living a life filled with joy

      Wynter living a life filled with joy

      In February 2014 Wynter was diagnosed with ALL, by the time it was diagnosed and they began treatment, the cancer was so severe that she needed to be LifeFlighted. A couple days later, her cancer had become so significant in her spinal column, that it began to form chloromas, which cut off the blood flow to her legs, causing a spinal stroke and leaving her permanently paralyzed. She remains wheelchair bound to this day. Her chemo was not as successful as other kids in treatment and she was not where she was expected to be. Her chances for survival got lower and lower. Her best option for the greatest long term results was a bone marrow transplant. She and I put our lives on hold for months and traveled to Boston. The treatment she received there was nothing short of life saving and miraculous. Wynter is now nearly 4 years in remission, and despite the life long deficits that cancer has caused her, she is happy, healthy, and living a life filled with joy.

      Kylie Chooses Joy

      Kylie Chooses Joy

      Mark, Kylie's dad tells us that "Kylie lived a life that radiated joy. From her earliest days her family called her Smiley Kylie because a smile was never far from her face. She grew to love being on stage and at the age of twelve, Kylie's knee began hurting while she was performing in a school play. She was soon diagnosed with Ewing's sarcoma, a rare bone cancer. Even when faced with harsh cancer treatment, Kylie fought with her trademark smile and chose joy in spite of her circumstances. After a 10-month struggle, Kylie's battered body succumbed to the disease. She left us with a lasting legacy of hope and a mission to cure childhood cancer. Smiley for Kylie was created in her memory to fund childhood cancer research and help others choose joy during difficult times.

      As for a quote, when she was in treatment, there was a social media challenge called, #WeAreHere. They asked the question, "why are you here." Kylie's response was very telling. I suggested that she was here to encourage others, to help them get through their hard time. Or maybe she was here to be the voice of children with cancer so that we could break through the funding gap. And then, I had it....

      "You're here to show people that you can still smile, even when life stinks."

      I remember her reaction as if it were yesterday. Kylie was instantly repulsed by my suggestion, but not at all in the way I expected. She was so quick to point out:

      "Daddy, life doesn't stink. It's just not fair sometimes."

      So, she wrote: "I am here to help people smile, even when life's not fair.""

      This is easier said than done, but Kylie lived up to her reason to the fullest. To inspire others when you are well is one thing, but to continue to inspire and spread positivity while fighting your own battle is another - Kylie fought a great battle and her story and memory still inspires and lives on today. Thank you, Mark, for sharing Kylie's story, we will continue to smile and choose joy, even when life isn't fair, in her honor.

      Learn more about Smiley for Kylie at www.facebook.com/smileyforkylie

      A vest for life despite two rare pediatric conditions

      A vest for life despite two rare pediatric conditions

      Pixie-Rose is a 2 year old twin who has been diagnosed with Myelofibrosis and Myelodysplastic Syndrome. Both conditions are extremely rare in children. Despite Pixie-Rose’s constant leg pain and night sweats she clearly has a vest for life. You can find Pixie-Rose exploring or creating mischief. She will have great bursts of energy but quickly crashes out due to the rare pediatric diseases she is fighting. Pixie-Rose will be preparing for a bone marrow transplant which is the only treatment option available. Her twin sister Presley-Pearl is her matching donor and hero! You can follow Pixie- Rose’s progress on her Facebook page www.facebook.com/pg/PixiesProgress 

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