With your help Carter can walk!
Donation protected
Meet Carter Ryan, he is 3 years old and one of the sweetest kids you’ll ever meet.
When Carter was born we immediately knew that something was wrong physically, and soon after we were seeing specialist after specialist. The first years were rough; no clear diagnosis, misdiagnosis and lots of physical therapy. At a year old he was finally able to roll over and in a year and half could sit independently for short amounts of time, but with physical therapy 3 days a week at Shriners Children’s Hospital he was making great improvements not only physically but with his speech as well!
We had finally got into a rhythm with our new life when one day in 2015, Carter was riding in the car when we were suddenly cut off in traffic, causing us to brake to a jarring stop in avoiding a collision. Nothing was alarming at first and Carter seemed fine, but weeks later a golf ball sized bump on his collar bone started to form… off to the Doctor we went. At first they told us it was an infection, then a tumor, and finally after a CT scan it showed it was a broken collar bone… but not only a broken collar bone, we also found several healed broken ribs ranging from months to years old. We couldn’t believe it! How could we have not known our baby had broken bones? He never cried, complained, or even bruised. What could have been going on? More tests, bloodwork and scans, and within a few days a Geneticist walked into our room at Doernbecher Children’s Hospital and gave us the news; Bruck Syndrome. Bruck Syndrome is an extremely rare genetic deformation made up of two diseases; Osteogenesis Imperfecta and Arthrogryposis. Our baby Carter was the 27th documented case in the world.
Because of his disability Carter has extremely brittle or soft bones, little bone density and is currently unable to stand independently. The only way for him to build bone density is to stand, and he can’t stand while bearing his own weight without special equipment. This is why we made the decision to start this page:
All of Carters Doctors agree that with a piece of equipment called a Stander he would be able to build the bone density he needs to almost certainly walk, but without it he stands no chance. Carter is not cognitively disabled, and although his verbal communication is behind he is above his age mentally and is as smart as a whip; he knows he should be able to walk, run and play like his friends, but without the equipment he needs he never will be able to.
A wonderful woman anonymously purchased a walker, called a Gait Trainer for Carter and it has been such a blessing to him. Seeing his smile when he can “walk” on his own is something that brings tears to our eyes, but unfortunately he needs so much more. The Gait Trainer teaches him how to step and starts the process of him spending his time upright, but will never be able to give him the tools he needs to actually walk independently.
We have fought with Carters insurance company for over a year to get him the equipment he needs and deserves, starting even before the diagnosis of Bruck Syndrome, but so far Insurance hasn’t approved anything, instead have declined 7 different times to where we are to the point of having to start the appeal process that could drag on for months.
If you find yourself in a position to donate to our family, we would be forever grateful. Any money we raise will be put toward buying Carter the equipment he DESERVES that we cant afford on our own. His Stander alone, requiring custom fitting is $16,000; but we'd also hope to purchase an electric wheelchair so that he can keep up with his friends while learning to walk, which is another $18,000. Any money not immediately put towards these peices of equiptment will be used to give our son the best quality of life possible.
Every child deserves the chance to walk and the opportunity for a full life, especially my baby. Thank you so much for reading Carters Story (so far!), and even if you cannot donate please share our story & take a look at Carters photos and videos we’ve attached, I know he will bring a smile to your face! It happens to everyone who meets him…
Thank you!
Carters Mom, Kailey Smith
When Carter was born we immediately knew that something was wrong physically, and soon after we were seeing specialist after specialist. The first years were rough; no clear diagnosis, misdiagnosis and lots of physical therapy. At a year old he was finally able to roll over and in a year and half could sit independently for short amounts of time, but with physical therapy 3 days a week at Shriners Children’s Hospital he was making great improvements not only physically but with his speech as well!
We had finally got into a rhythm with our new life when one day in 2015, Carter was riding in the car when we were suddenly cut off in traffic, causing us to brake to a jarring stop in avoiding a collision. Nothing was alarming at first and Carter seemed fine, but weeks later a golf ball sized bump on his collar bone started to form… off to the Doctor we went. At first they told us it was an infection, then a tumor, and finally after a CT scan it showed it was a broken collar bone… but not only a broken collar bone, we also found several healed broken ribs ranging from months to years old. We couldn’t believe it! How could we have not known our baby had broken bones? He never cried, complained, or even bruised. What could have been going on? More tests, bloodwork and scans, and within a few days a Geneticist walked into our room at Doernbecher Children’s Hospital and gave us the news; Bruck Syndrome. Bruck Syndrome is an extremely rare genetic deformation made up of two diseases; Osteogenesis Imperfecta and Arthrogryposis. Our baby Carter was the 27th documented case in the world.
Because of his disability Carter has extremely brittle or soft bones, little bone density and is currently unable to stand independently. The only way for him to build bone density is to stand, and he can’t stand while bearing his own weight without special equipment. This is why we made the decision to start this page:
All of Carters Doctors agree that with a piece of equipment called a Stander he would be able to build the bone density he needs to almost certainly walk, but without it he stands no chance. Carter is not cognitively disabled, and although his verbal communication is behind he is above his age mentally and is as smart as a whip; he knows he should be able to walk, run and play like his friends, but without the equipment he needs he never will be able to.
A wonderful woman anonymously purchased a walker, called a Gait Trainer for Carter and it has been such a blessing to him. Seeing his smile when he can “walk” on his own is something that brings tears to our eyes, but unfortunately he needs so much more. The Gait Trainer teaches him how to step and starts the process of him spending his time upright, but will never be able to give him the tools he needs to actually walk independently.
We have fought with Carters insurance company for over a year to get him the equipment he needs and deserves, starting even before the diagnosis of Bruck Syndrome, but so far Insurance hasn’t approved anything, instead have declined 7 different times to where we are to the point of having to start the appeal process that could drag on for months.
If you find yourself in a position to donate to our family, we would be forever grateful. Any money we raise will be put toward buying Carter the equipment he DESERVES that we cant afford on our own. His Stander alone, requiring custom fitting is $16,000; but we'd also hope to purchase an electric wheelchair so that he can keep up with his friends while learning to walk, which is another $18,000. Any money not immediately put towards these peices of equiptment will be used to give our son the best quality of life possible.
Every child deserves the chance to walk and the opportunity for a full life, especially my baby. Thank you so much for reading Carters Story (so far!), and even if you cannot donate please share our story & take a look at Carters photos and videos we’ve attached, I know he will bring a smile to your face! It happens to everyone who meets him…
Thank you!
Carters Mom, Kailey Smith
Organizer
Carter Ryan Smith
Organizer
Oregon City, OR