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Carter Smith Treacher Collins Fund

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Carter is a happy 8 year old boy who was born with a rare condition called Treacher Collins Syndrome. This is a genetic cranio-facial disorder that resulted in Carter having a recessed chin, missing bones, and deformed bones in his face. As a result he has had 15+ surgeries to fix these problems such as a tracheostomy, nissen fundoplication, cleft pallet repairs, jaw distraction, various dental repairs, rib grafts, craniosynostosis, and many more. After all of this, Carter still relies on a trach to breathe and a feeding tube for all of his nutrition. 

Thanks to an amazing team at Seattle Children's Hospital, Dr. Richard Hopper and his team have developed a new procedure called a Subcranial Rotation Distraction. This is the logical next step for Carter. This will allow Carter to breathe and eat on his own as well as allowing air to pass by his vocal cords allowing him to speak, thus improving his quality of life. The process involves separating his mid face, rotating and distracting it forward, and allowing bone to develop within the new space. 

We have been able to complete the prerequisite surgery in prep for the SRD, but we need your help to complete the rest. We will be required to stay in the Seattle area for 8 weeks, depending on recovery, for surgery and recovery time. Your donations will allow us to fly to Seattle and for me to  fly home periodically for work and to check on our home. Another percentage will go toward paying for any other costs that insurance refuses to cover. Your donation will also cover lost wages. The majority of these donations will cover our living expenses for the estimated 2 months of our stay. We have been looking into booking an AirBnB (hotels were way too expensive) so that we could be close to the hospital for emergencies. The hospital does have a Ronald McDonald House, but we would not know until 24 hours before surgery if we would have a room. Seattle is not a place to get a room last minute, so we feel Ronald McDonald is not a safe choice for us. We are looking for a place with a small kitchenette to store groceries and cook instead of getting delivery as to keep costs down as much as possible. We will also need funds for transportation during this time. 

We have scheduled surgery for June 5th, so we are hoping to reach our goal by then. Once surgery is over, we will need to fly back for post op visits as well as other surgeries in the future. If you would like to keep track of our story, you can follow us on our Facebook page, Carter is Seattle Bound.  We are so grateful for everyone who is willing to donate and help our sweet boy live the best life he possibly can. Thank you.
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Donations 

  • Cassie Long
    • $100 
    • 5 yrs
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Organizer

Nick Smith
Organizer
Monticello, MS

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