Therapy Room, Dream Bedroom

Williams Syndrome

An Ironman brings joy to a beautiful child with iron-clad faith. The story of Callie Truelove is one of faith, hope, love and perseverance! Just as a butterfly spreads its wings and flies, Callie is soaring against all odds. As an infant, she was diagnosed with Williams Syndrome and numerous other comorbidities that threatened her life. Doctors told her parents that there was no cure or surgery to help her and they did not expect her to make it to her first birthday. Despite his dreadful news, her family kept faith and with lots of prayers and love have spent every minute of the past 10 years cherishing their time together and proving them medical community wrong. Following an MRI this March, the Doctor called with news that Callie’s aorta had gotten significantly worse and she needed to have surgery on her heart. He told her family that it would be fatal if she didn’t have the procedure, but children with William Syndrome often experience sudden death under anesthesia. Due to significant drops in blood pressure and cardiac arrest, Callie’s condition worsened and her family had to decide whether or not she should have the surgery, knowing that it could be fatal either way. On April 15, 2014 Callie endured heart surgery and less than a week later she went home feeling better. Callie has always beat the odds against her. She has obstacles and medical complications that she faces daily, including high blood pressure, TIAs, severe developmental delays, sensory processing disorder, weakness and difficulty feeding herself. Callie loves animals, butterflies, going to church, singing, doing crafts and making people laugh, especially her three sisters and nieces. The road in Callie’s life is not always going to be easy; but, Callie is strong and brave. She embraces life to the fullest every day-overcoming these hurdles like an iron-clad champion. Speaking of champions, ten-time Ironman Champion Dave Nazaroff will partner with SOARD to raise money to bring a dazzling home make-over to Callie. Dave and his wife Kaete, cofounded The Ride to Give, which is a charitable 501(c)(3) non-profit organization based in Nyack NY who fundraise year-round for families who have children with long-term illnesses. Dave will ride solo on his bicycle, traveling 900 miles from New York to Georgia over six days to raise money to make Callie’s dream of a Jungle themed therapy and play room come true! In the summer of 2013 Dave, followed by a support van with a team of 3, completed the first annual Ride from Nyack to Jefferson, GA (over 900 miles by bicycle) in 5 days to raise awareness and donations for the family of Tripp Halstead, a toddler who suffered a traumatic brain injury in fall of 2012. The Ride raised $180,000 for the Halstead family, plus an additional $17,000 for Sunshine on a Ranney Day to provide room renovations for Tripp. Ride to Give plans to help children with special needs and life-threatening illnesses overcome their obstacles by completing this ride annually. SOARD is excited to have the opportunity to partner with Ride to Give again this year in honor of Callie! Join us in supporting Dave as he makes the 900-mile trek carrying a check for this cause! He will push himself mentally and physically to overcome the heat, terrain and exhaustion to help Callie continue to spread her wings and soar!

Family Photos

Before Sunshine

After Sunshine

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