Photography by Pix by Gigi
This tall, bright and handsome young man is Connor Bode. Connor has a whole team of supporters rooting for him and working heroically together to make his dreams of a wheelchair accessible bathroom and bedroom makeover a reality!
Twelve time Ironman Champion Dave Nazaroff with Ride to Give, will once again partner with SOARD to raise money to bring an extensive bed and bathroom makeover for Connor. The renovations will enlarge his room and make his bathroom wheelchair accessible so he can mobilize with ease. Dave Nazaroff and his wife Kaete, cofounded Ride to Give, which is a charitable non-profit organization based in Nyack NY. Last year, Dave trekked 900 miles through heat, pain and rough terrain to raise funds for renovations for one of SOARD’s makeover recipients, Callie Truelove. 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 go toward our extreme home renovations for Tripp. Ride to Give aims to help children with special needs and life threatening illnesses overcome their obstacles by completing this ride annually. This year, the Halstead Family is also partnering with SOARD and Ride to Give to help make Connor’s dreams come true. SOARD is excited to have the opportunity to partner with Ride to Give and the Halstead family in honor of Connor! Our SOARD Community is forever bound by the mission of bringing smiles to children with lifelong illnesses! Together we achieve so much more.
We can’t wait to see Connor’s handsome face light up with joy at the big reveal. His family describes him as a bright light with contagious smiles and giggles. Anyone who meets him will agree! At five months of age, Connor was diagnosed with open-lip bi-lateral Schizencephaly, a very rare brain disorder characterized by abnormal clefts or slits in the brain's cerebral hemispheres. Connor has Cerebral Palsy caused by the Schizencephaly and as a result is nonambulatory and nonverbal. He is hearing impaired, has a visual impairment, has abnormal muscle tone, seizures, hydrocephaly and partial paralysis. Connor has endured several significant surgeries in his sixteen years of life. His most recent surgery was an incredibly painful surgery to reconstruct his hip and lengthen his hamstrings. It took almost 6 months for Connor to build up his strength and tolerate weight-bearing in his stander and gait-trainer again. Connor’s daily therapeutic regimen includes tube feedings, a plethora of medications, speech therapy, physical therapy, occupational therapy, vision therapy and music therapy. He is working hard to exceed expectations and achieve his goals. His greatest supporters are his parents who are always by his side, helping him to maximize his full potential and shine!
Connor currently weighs 120 pounds and is almost 6 feet tall. It is very difficult to lift him into his shower chair, wheelchair and into his hospital bed. SOARD’s renovations will allow safer transferring from the wheelchair to the bed and shower by his parents as well as increased mobility and independence. Like every teen seeking more independence, he wants to have fun and is on the go!