Care for Collin

     Collin Betley is one of the strongest, funniest, and bravest kids! He has been through more at the age of 13 than most people go through in a lifetime, and he does it with his adorable smile on his face! Everyone that meets Collin is instantly in love with his personality, humor, and extremely loud and infectious laugh.

     Collin was diagnosed with Duchenne’s Muscular Dystrophy at the young age of 15 months. With this disease, things he could once do would slowly be taken from him. As Collin got older he would fall frequently, had a hard time keeping up with peers, and worst of all, his younger siblings started to pass up his abilities. Collin became wheelchair bound in April of 2020. As difficult as this was for us, it gave him a sense of freedom and comfort.

    This diagnosis of Myscular Dystophy was obviously extremely difficult for everyone that knows him. After our initial shock and grief, we decided that we will not let this ruin us, or ultimately, Collin. After all, he wouldn’t be our sweet, adorable Collin without everything that goes with him. We decided that we would do everything in our power to make sure this kid has the best life we can possibly give him, and we believe we have truly done just that!

     Our goal has been to make our home as comfortable and accessible for Collin as possible, because he deserves any freedom he can have. We bought a ranch style house two months after his diagnosis. Although it is a ranch, we still had a lot to do to make it work for him. We raised floors, leveled out all entrances to the house, widened doors, modified his bathroom, and bought a handicap van. 

     In addition to making our home as comfortable and accessible as possible, we have also done everything in our power to make sure Collin has the opportunity to be a part of any treatments that are possible. Collin has been in many different therapies since he was just 12 months old. Collin has also been a part of a clinical trial for six years. This trial consists of weekly infusions, several surgeries, time off school, and a lot of emotional stress for a kid that doesn’t fully understand why we are doing this.  This trial, that he has been part of from the beginning, has recently ended. This is great news because now this medicine is available for many more people. However, the downside is that now the expense of the drug and nurse that administers it are no longer paid for through the trial.

 

     In addition to Collin’s diagnosis of Muscular Dystrophy, he also suffers from severe scoliosis. For the last five years, Collin has worn a back brace while sleeping to try to correct this. Unfortunately, because his curve is so severe and beginning to effect his lungs and heart, he will now need surgery. The team of spinal doctors at Shriners will be placing a rod in his back. This surgery will entail an extremely long recovery process, including a week long hospital stay, and the need for two people to be lifting and moving him for at least a year.

 

     Collin has always been an inspiration to our family and to the many friends who have been touched by his story. We remain committed to providing him with the best care that is available, and we thank you for your prayers and your support as we prepare for the next chapter in the life of this amazing young man.