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Cheering For Charleigh

Cheering For Charleigh

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Charleigh's Journey with Spinal Muscular Atrophy Type 1

Photos from Cheering For Charleigh's post 11/23/2024

Charleigh Bug got her 1st hair cut today 😊 ♥️ she was a little nervous at first, but loved it. She felt like such a big girl 😊

What a blessing this trip to Texas has been!! We were able to see one her therapists from NAPA, we were blessed with not 1 but 2 pieces of equipment (one for now and one that she will be able to grow into), she made another little friend that has SMA just like her, and also her scoliosis curve has gone up very minimally in the last 6 months. God was present in this trip. Thank you everyone who is praying for us. We have had many struggles with insurance the last year approving equipment and reimbursements for therapy’s that we have taken Charleigh to. After a year of fighting insurance, she has finally received her new medical stroller, so we are no longer eligible for anymore pieces of equipment this year. The kidwalk that is in the video, we have been praying for, as we had no idea how we were going to pay for one out of pocket. We were gifted this one for free. Charleigh has so much freedom in the kidwalk. The first thing she screamed out was, “I’m walking!”It is amazing to feel God’s presence when we were feeling so defeated. God was a huge part of this trip and we are truly grateful. As far as her scoliosis, it went from a 81 degree curve to 85 degrees. We also did an X-ray of her spine with her in her over corrective brace and it is holding her at 67 degrees while she is wearing it. We will go back to Scottish Rite in November for new X-rays and a more definitive surgery date. The orthopedic surgeon wants her a bit bigger for the magec rods to adhere better and the risk of complications to go down. We are thinking Spring of 2025 for her surgery, but of course that can always change. Again, we can’t thank you enough for your prayers ♥️ 05/15/2024

Charles Jones

What a blessing this trip to Texas has been!! We were able to see one her therapists from NAPA, we were blessed with not 1 but 2 pieces of equipment (one for now and one that she will be able to grow into), she made another little friend that has SMA just like her, and also her scoliosis curve has gone up very minimally in the last 6 months. God was present in this trip. Thank you everyone who is praying for us. We have had many struggles with insurance the last year approving equipment and reimbursements for therapy’s that we have taken Charleigh to. After a year of fighting insurance, she has finally received her new medical stroller, so we are no longer eligible for anymore pieces of equipment this year. The kidwalk that is in the video, we have been praying for, as we had no idea how we were going to pay for one out of pocket. We were gifted this one for free. Charleigh has so much freedom in the kidwalk. The first thing she screamed out was, “I’m walking!”It is amazing to feel God’s presence when we were feeling so defeated. God was a huge part of this trip and we are truly grateful. As far as her scoliosis, it went from a 81 degree curve to 85 degrees. We also did an X-ray of her spine with her in her over corrective brace and it is holding her at 67 degrees while she is wearing it. We will go back to Scottish Rite in November for new X-rays and a more definitive surgery date. The orthopedic surgeon wants her a bit bigger for the magec rods to adhere better and the risk of complications to go down. We are thinking Spring of 2025 for her surgery, but of course that can always change. Again, we can’t thank you enough for your prayers ♥️

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Olive Branch, MS
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