Meet Charlie! Our beautiful 2-year-old boy was born in April 2023. After a NICU stay full of questions, he was diagnosed with a SHOC2 genetic disorder at 8 weeks old. This comes with a spectrum of issues and severity, and we’re still learning what Charlie’s specific story will be.

So far he has overcome underdeveloped lungs, the initial reason for our NICU stay. We’ve also seen God heal his heart of two holes and pulmonary stenosis, when the docs were talking about surgical repair. It was at the same time that he ended up in the hospital for failure to thrive, and was given the NG tube. But due to his weight loss at 8 weeks, heart surgery was put on hold and just being discussed, he needed to gain some weight and become stable in his tubal feeds first. In the time needed for him to gain weight, his heart started healing on its own with much prayer from all of you. Surgery turned into let’s wait and see what happens, to now being healed and just checked on once a year as he grows. After becoming big enough for surgery, he had his g-tube placed for a safer more permanent feeding solution.

At this moment, Charlie’s biggest hurdles are eating and growth. He has been g-tube dependent since birth but is making great strides with a willingness to taste food now. Charlie started growth hormone therapy in Dec ‘24. We’ve seen great progress in his growth, going from 3-month clothes to 9-month clothes so far. However, he still struggles with low muscle tone, specifically in his legs. This means that he is still unable, at this time, to sit, stand, crawl, or walk on his own. He can, and we believe and pray, eventually overcome this.

But that comes with current needs that we are reaching out for help to fulfill. Our current home has one bathroom with a standing shower. In the not-too-distant future, Charlie will outgrow the baby bath, and we will be given a special shower chair for him. Our goal is to have a bathtub put in that his shower chair can fit in, and I can bathe him more accessibly. Depending on how much we raise, we would also use the money to help with the copays for his larger equipment that they are working on getting him. This equipment includes a stander and shower chair to start, and eventually a walker.

We’d love to also send a #TeamCharlie bracelet to those that donate, so please reach out to me with your shipping address if you’d like to receive one. Thank you so much for reading, thank you for any donations, and most importantly, thank you for all of your prayers as we’ve seen miracles in his life already!