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

We are HOME and Charleigh is doing so well!! ❤️ She was discharged Saturday, and once we got home, she was already askin...
10/08/2026

We are HOME and Charleigh is doing so well!! ❤️ She was discharged Saturday, and once we got home, she was already asking to get on their play mat so she could roll around just THREE days post-op! 😲 She is literally a rockstar! She’s already been working so hard at getting back to crawling and sitting herself up.

While we were still inpatient, one of her sweet nurses made this award for her. She was their first patient to reach 25 lbs in traction! What an accomplishment for this strong girl!! We are absolutely amazed at how well she is doing and how wonderful the staff at Le Bonheur made our 5½-week stay. She had some of the absolute best nurses, and we could not have asked for a more amazing surgeon and team of doctors. We definitely miss all the staff and the many friends Charleigh made while there, but we are so glad to be back in our own beds!

Thank you again for all of your prayers and support. I know we have said this multiple times, but we have been so incredibly blessed during this time!! We’ve had so many meals brought to us, people have cut our grass multiple times, our home was cleaned before we came home, and Charleigh was blessed with so many crafts and activities to keep her busy! Thanks to the countless donations we received, Charleigh was also able to enjoy her beloved Chick-fil-A breakfast and dinner so many times throughout our stay!

Truly, thank you so much for everything. We have experienced firsthand God’s love pouring out on our family. ❤️

09/30/2026

Charleigh did great during surgery! We are back to our regular room. She went straight from recovery to her room instead of PICU.
Thank you so much for all the prayers!!

09/30/2026

Girl still has those crawling and rolling skills even with the halo on. She truly has loved being in traction! She has her own version of “the floss” too🤣
Charleigh spends about 30 minutes a day out of traction doing physical therapy so she can maintain the skills she had prior to halo traction.

Tomorrow is the BIG DAY for our Charleigh bug. She has been dealing with a respiratory sickness for the last week and a ...
09/30/2026

Tomorrow is the BIG DAY for our Charleigh bug. She has been dealing with a respiratory sickness for the last week and a half so we weren’t for sure on an exact date. Charleigh will go for her second surgery tomorrow morning to remove the halo and have her rods placed in her back. This date came much sooner than we anticipated. She ended up getting to her top goal weight of 25 lbs in traction! Just a few pounds shy of half of her body weight. She is truly the strongest girl we know!

We just ask if you don’t mind saying a little prayer for our girl that everything goes smoothly, especially with her still recovering from this respiratory sickness. We anticipate this surgery not taking as long as her first since the screws are already in place.

We have many worries with this next leg of the journey, but oh so many things to be grateful for.
Thank you all for your continued support and prayers. ❤️

09/09/2026

Here is just a little clip of everything Charleigh has been up to while living at LeBonheur. By the time we are able to go home, she is probably going to know every nook and cranny of the hospital.
She makes sure we go to activity time and catch a movie or two in the Room of Magic. And let’s not forget her favorite spot, the Seacrest Studios where she likes to play Bingo 🥰. Thank you again for continuing to pray for our girl.

Charleigh did great during surgery. No complications! She is doing way better than anyone anticipated. She originally ha...
09/07/2026

Charleigh did great during surgery. No complications! She is doing way better than anyone anticipated. She originally had a goal weight of 8 lbs… she passed that last week. Her next goal was 10 lbs and she passed that right before the weekend. She is now at 13lbs with her new goal weight being 15 lbs. We get new x-rays every Friday. Last Friday’s x-ray showed 78 degree curve on the top. Before surgery her top curve was 105 degree’s. Just a little over one week of traction has already brought her curve down 27 degrees, which is amazing!! Charleigh also had kyphosis before surgery and that no longer is there!
I can’t say enough about Charleigh’s attitude through all of this. She has stayed true to her little ray of sunshine attitude despite being in pain.
She told us after surgery, “surgery wasn’t as bad as I thought it was going to be.” She is truly the strongest person I know.

We want to thank everyone that has checked in on us, prayed over us, sent cards, gift cards, activities for Charleigh, and meals. We have been overwhelmed with the amount of support we have had during this time. It’s truly amazing! This surgery has been something we have all felt burdened by as the time kept approaching, but God has showed his presence through it all.

08/26/2026

Charleigh did wonderful during surgery! Everything went as planned. She is in a good bit of pain, but still has a wonderful attitude. Thank you all for your prayers!!

We have been meaning to do an update on Charleigh for a while and it just hasn’t happened. Life has been so busy since a...
08/26/2026

We have been meaning to do an update on Charleigh for a while and it just hasn’t happened. Life has been so busy since adding baby sister to the crew. Charleigh has been doing really well. She started school, which she loves!! She says it’s borning sometimes, but loves activity time, music, and Bible class.
Charleigh was supposed to have her halo and magec rod surgery last spring, but got pushed off with baby sister being born in August of 2025.
Charleigh goes in tomorrow to have her halo traction device placed along with the screws and hardware that will eventually attach to the magec rods she will need in the next few weeks. With Charleigh already having low bone density, attaching the screws now will give them time to adhere to her spine, making a much stronger anchor point for the rods to be attached to.
Our hopes is that the halo traction device will help straighten out her spine so there is less time in the OR and easier placing of the two rods that will run along her spine. The straighter we can get her spine, the better. We will be in the hospital for the next 6-12 weeks. They will gradually add weight to her traction device until they hit her goal weight. Once they start to see no more movement in her spine curvature, that is when she will go back in for surgery, take halo off and place the magec rods. This could be as fast as 4 weeks or take much longer.
Everything will take place at LeBonheur Children’s Hospital. We will be calling that home for the next couple of months. 🤪
Please pray for fast recovery and pain management as Charleigh navigates these next few weeks.

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.

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Olive Branch, MS
38654

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