Cheering For Charleigh

Cheering For Charleigh Charleigh's Journey with Spinal Muscular Atrophy Type 1

6 years ago to this day, we found out we were expecting our little miracle girl 🌸Charleigh Brooke🌸Now we get to announce...
02/15/2025

6 years ago to this day, we found out we were expecting our little miracle girl 🌸Charleigh Brooke🌸

Now we get to announce that this little miracle girl is going to be a BIG SISTER!!

Charleigh starts her Big Sister duties August 2025!! 😊🥰

We wanted to give a long overdue update to Charleigh’s appointment at Scottish Rite from back in December. We have been ...
02/06/2025

We wanted to give a long overdue update to Charleigh’s appointment at Scottish Rite from back in December. We have been wanting to update, but life has just been chaotic at the Jones house 😅
Her X-ray results weren’t what we were hoping for. Charleigh’s curve stayed stable at about 85 degrees from May 2024-September 2024, so we were really hopeful we wouldn’t see much change in December 2024. Well, her curve went from a 85 degrees in September 2024-97 degrees in December 2024. That’s a 12 degree difference in just about a 3 month time frame.
With that news, we had to go ahead and decide where to do her surgery. We have been seeing an ortho here in Memphis and one At Scottish Rite in Texas. Both are absolutely wonderful and very knowledgeable. We ended up deciding to do her surgery here in Memphis so we are closer to home. We are going to be at Le Bonheur for a while and feel Charleigh will feel most comfortable being close to friends and family and in a more familiar hospital.
Charleigh will go in for her first surgery in March (we don’t have an exact date yet because we are still getting some pre-op testing done). March is when they will place her halo traction device. This will help lengthen out her spine to make it easier for placing her rods. She will be in this traction device for 6-8 weeks. Could be a little longer or could be shorter. She will then go in for her second surgery to remove the halo and place the rods.
We are very nervous for this surgery. We know she will be in great hands though.
We want to say how much we appreciate your prayers. They mean so much to our family. Charleigh is defying all the odds through God’s Grace!! He has been so good to us, even through the hard times.

We are back at Scottish Rite for new Xrays on Charleigh’s back. Please pray for our family as we make decisions in prepa...
12/09/2024

We are back at Scottish Rite for new Xrays on Charleigh’s back. Please pray for our family as we make decisions in preparation for her scoliosis surgery. We will also see her ortho in Memphis this week to get his opinion as well.

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

Charleigh’s therapy place is having a little dress up week. Today was dress up like candy ☺️
10/28/2024

Charleigh’s therapy place is having a little dress up week. Today was dress up like candy ☺️

09/26/2024

Conversations with Charleigh on this beautiful Thursday 😁. Apparently “fake pushing on the swing” is when you only push with one hand because you don’t go very high 😂

Charles Jones
05/15/2024

Charles Jones

05/15/2024

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 ♥️

05/09/2024

We’ve been well over due on an update about Charleigh…. We’ve been in a little bit of a funk lately with news that Charleigh is going to need back surgery sooner than what we were hoping and praying for. 6 months ago we saw an orthopedic surgeon in Dallas, TX that specialises in Neuromuscular Scolisos (also see’s a handful of kiddos in our SMA group).
He did new X-rays and Charleigh’s curve was at 81 degrees. He scheduled to see us again in 6 months, so here we are on our way to Texas knowing that her curve has increased.
We want to be positive because Charleigh’s life has been nothing but one big miracle, but we’d be lying if we said we didn’t feel defeated. We have traveled thousands of miles, seen a multitude of doctors and specialists, and spent thousands of dollars trying to find anything that may slow down her curve with little success.
We continue to pray for a miracle, but we also pray for peace and guidance as we embark on this leg of the journey. We know God has a purpose for Charleigh and know God is watching over her.

On a more positive note, during our little trip to Texas, we will be seeing one of her therapist from NAPA for one day 😊. We are trying to squeeze in a little E-stim and Cranial Sacral therapy while we are here in Texas.

Here’s a little video of Charleigh rocking and rolling 😊 Never did I think I’d see this girl rocking her chair by herself or talking as much as she does. The girl NEVER stops talking which is such a huge blessing ♥️😊♥️
Thank you as always for continuing to pray and support our sweet girl.

03/16/2024

Here Charleigh is showing us just how much of a miracle she really is!! God is so very good!! 😊. Charleigh can now sit up by herself and lay herself down with absolutely no assistance!! To think there was a day when this precious girl could barely move her head ♥️😊♥️. Now look at her!!

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Olive Branch, MS
38654

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