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With All Your Heart Jackson Lee Daniels

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With All Your Heart Jackson Lee Daniels

Jackson Lee Daniels was born with only half a heart, a congenital defect called Hypoplastic Left Hear

04/02/2026

Thank you for all of your prayers and kind words!! We are HOME!! I am working on getting his new fancy Bluetooth pacemaker to connect to my phone until he can get his own and then we will be all set until he has a wound check next Friday in Orlando.
Now to play catch up 😅 Charlie isn’t feeling well so I have two patients now.

04/01/2026

It’s Happening now!!! His New Pacemaker is going in. They just took him back for surgery. I’m so thankful to his care team for squeezing him in and getting it replaced ASAP.
13 years ago today he had his first open heart surgery at the same hospital.

03/31/2026

Well… this isn’t exactly how I saw our day going yesterday but here we are. We went to a regular “well child checkup” and when they took Jackson’s vitals his heart rate was too low and his blood pressure was low.
His pacemaker is set to 80 but his heart rate is 65. It seems that the battery has taken a p**p much faster than predicted. They sent us directly to the ER and Arnold Palmer sent the ambulance to come pick him up. *shout out to the amazing team who picked him up! They were wonderful!!*
He is admitted and we are waiting (and hoping) they will replace it. Given how far we live from the hospital and how quickly the battery end of life happened we are really hoping they will approve it. So if you’re the praying type or the positive vibes kind anything would be appreciated. Sorry for the delayed post but we didn’t get to speak with cardio until this morning. Apparently lots of heart families are also here and the unit is BUSY! Luckily for him he is upgraded to another floor and in a ginormous comfy room with a bed for me, bathroom and shower! OooOooOoH La La 🤣

03/23/2026

We had the absolute pleasure of meeting Colin Queen with ANSA Motorsports as part of Jackson’s 13th birthday. It is a moment our family will never forget.

What made this meeting even more meaningful is that Colin and Jackson share the same congenital heart condition, HLHS. Seeing someone a few years ahead chasing his dreams and doing what he loves meant so much to all of us, especially Jackson.

There is something powerful about seeing what is possible. Colin is not only doing incredible things on the track, he is also inspiring others to live life fully and not let a diagnosis define their future. That kind of impact goes far beyond racing.

We are so grateful to Gretchen Queen for making this connection happen. Your kindness means more to our family than we can fully put into words.

We will be cheering Colin and his team on every step of the way and truly hope our paths cross again soon. Thank you!!

03/20/2026

Jackson is officially a Teenager!! Happy 13th Birthday!! I asked him if I could hold him one last time and he said yes 🤣 I am truly so thankful he is growing to be an incredible young man and love him more than he could ever imagine. Forever our miracle baby but not a baby anymore

03/16/2026

Second time is a charm?! 🤞
Over a month ago Jackson had labs drawn which included Genetic testing that had to be sent out. For some reason, they never made it to the destination.
So this time his immunologist sent a kit to the house to do two cheek swabs (YAY!! NO pokey! Jackson was very happy about that!) I personally dropped them off at FedEx this morning and took picture proof 🤣 Now we wait… again.

03/06/2026

Jackson is getting an UPGRADE!! His pacemaker that he got when he was 3 needs to be replaced. This model will have Bluetooth capabilities (so fancy) and new features his old one doesn’t have. We were anticipating he would have it removed and replaced later in the year but found out yesterday the battery is draining faster than we expected. So, over the next 3 months he will have monthly checks to make sure the battery is still kicking. Jackson is not excited in the least bit about having surgery and opening old scars can certainly kick you in the feels. But, we knew this was coming just didn’t realize it would be here so quickly. If you didn’t know what a pacemaker looks like now you do! When I know more I will keep everyone updated.

02/12/2026

Today was the annual Heart Party!! This year they added so many extra cool things. The best part though?! Coming full circle and getting to see the woman who brought Jackson his life saving medicine the day after he was born. She brought him on the Winnie Palmer ambulance back to Orlando. Without her and her team we wouldn’t be here today. Just a feel good amazing moment. Love love love the people at Arnold Palmer so much. ❤️💙Charlie had so much fun and enjoyed the endless amounts of candy 🤣
Jackson always “pushes the button” for the trains too IYKYK
We also made it a 2 for one trip and finished up some more labs for a small genetic panel.

01/23/2026

Jackson had a 2 hour appointment with an immunologist yesterday. It was lots of me trying to remember every little thing since birth. Let me tell you how much I DIDNT remember 🤣 The Immunologist ordered labs, and for the first time ever, Jackson didn’t cry! That’s a big deal because he is terrified of needles. So, I took a picture to show Dada and told him “Thumbs up!”
He said “no, it’s just meh…” So we got a halfway thumbs up. He slept all the way home. Now we wait for the 23 tests to come back 😅

01/06/2026

Here is an updated picture of the house with the new metal roof and gutters!
A HUGE THANK YOU to 3LP Roofing and East Coast Soffit& Gutters for your beautiful work! We are so thankful!

12/09/2025

They’re starting the roof today!!! Thank you 3LP Roofing for everything you are doing for our family 🩵💛🩷

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Orlando, FL
32806

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