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God gives us our own miracles and the Longstreth family feels like they were blessed when he gave them their son Sebastian ("CC") and his contagious smiles. Sebastian, the third son of Shannon and Brandon, was born with Down syndrome, Atrioventricular Septal Defect, and a bowel blockage. He also has severe Tracheomalacia, which occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties began soon after birth. Sebastian now requires a ventilator to breath and is fed through a J/G feeding tube.
Sebastian spent the first seven months of his beautiful life fighting at Nationwide Children's hospital in Columbus, OH. He has coded more times than his mom can count, and is a very critical little guy. He is constantly fighting Tracheitis, a bacterial infection of the trachea that causes an inflammation and can cause dizziness, headache, fever, chest pain as well as earache, which makes him even more critical. Through it all, Sebastian remains a fighter. He also has had one major heart surgery to correct his heart defect and so far he has no reoccurring heart problems.
Sebastian is now two years old and growing like a weed. He currently sleeps in a infant bouncy chair that is way too small for him and is in desperate need of a special medical bed. Unlike a regular crib that tangles his ventilator tubing, a KayserBetten medical bed (shown) will easily allow for his head to be raised for better breathing. He likes to flip over while he sleeps causing his trach to come out which creates a critical situation for his parents. This bed will raise and lower completely for better positioning of his body for easy access for when his parents need to get access to him fast in a coding situation. Sebastian also thrashes a lot in his sleep when he needs to stretch out, something he can't do in a bouncy seat on the floor.
Due to Sebastian requiring 24/7 ventilator support and tube feeding, every time the wind blows the wrong way, his parents fear losing power. It's a scary feeling when you realize the things most people take for granted could be life changing for someone else. Sebastian needs a back up generator to support his breathing and other medical needs in the event of a power outage.
Ride to Give is stepping in to raise the funds needed for the medical bed and a 14,000 watt generator. The family began raising funds through a GoFundMe page and those funds will now be used to begin modification to their home to better accommodate Sebastian and his two older brothers, Caulin age 14, Brandon Jr. age 7.
Sebastian has blessed so many with his smiles and day to day milestones. His mother says, "Sebastian is ten times tougher and stronger then I could ever be. He shows me strength and that anything is possible. He is here to change the world, one smile at a time."
Please visit their Facebook page Sebastian's Journey, and donate above.
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