Brave Like Jaxon: Our Duchenne Journey

12/04/2023

We try to be very open about Jaxon’s diagnosis and everything that comes with this diagnosis, but somethings are just to hard to even put into words. Todays one of those day that my heart is breaking…that all I can do is cry…I see so many children being able to play sports, running around with their siblings playing hide and go seek, riding bikes, throwing the baseball with their dads…. All the things Jaxon can’t do and it’s such a heartbreaking thing to watch. Sometimes the hardest thing to do since Jaxon’s diagnosis is to be strong. The last few days Jaxon’s been very down and upset as he says because his legs aren’t “normal” and that he can’t do everything he wants to do….that’s the the most gut wrenching feeling 💔 Seeing the hurt in your child’s eyes knowing there is so little you can do or even do at all….is the worst thing a parent should even have to experience… 😢

Life has thrown so many difficult cards our way and I definitely think most of the time we hold our heads up so high but sometimes it’s so so so hard. Duchenne muscular dystrophy has taken so much from Jaxon and our family but it will never take away the amount of love and support all of us receive on a daily, our village is by far the best and we have some of the most selfless amazing people in it.

Jaxons fight is our fight and will always be! The strongest little boy we have ever met and we are beyond lucky that God chose us to be his parents. 💚

10/03/2023

We have created a new QR code to help people find Jaxon’s Go Fund Me Page! Please share 😊

09/28/2023

This is the reality of DMD “clinic” days…

Jaxon’s 6 month check ups are normally from 12:15 till about 4:30-5pm. So many different things happen, so many doctors, so many scans, so many tests, so much information….But also so many laughs, Jaxon is always making us laugh being his usual silly self…and he always keeps the biggest smile through it all🥹

He has an awesome team behind him and honestly his appointment went a lot better than we expected, they were very pleased with how he was especially after a femur fracture, his test came back pretty “okay”. I say okay because they weren’t perfect but they also weren’t bad results. This boy is so strong and Duchenne muscular dystrophy doesn’t know who it’s up against!!! 💚 We love you, Jaxon so much!

09/27/2023

Please send good vibes and prayers for us as Jaxon has his 6 month check up tomorrow.

No matter how many of these appointments we’ve already been too, me and Corey are always still so nervous and anxious. 😟

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09/22/2023

I haven’t done an update lately on Jaxon, and some things have been really heavy on my mama heart and Corey’s daddy heart.

First off I LOVE this picture so I thought what a great one to use for this post. This shows how much love Jaxon’s cousins have for him. They always include him, they always make sure he’s okay…They’ve always been so understanding and so amazing with everything that comes to anything with Jaxon. So thankful for their relationship.

Jaxon has really really had such a hard time lately with all the things he “can’t do” as all of the other kids. He has started to make comments to us and one was “mommy I wish that I had normal legs” that’s the things people don’t see, they don’t see the heartbreak when your child comes to you and there is really honestly nothing at all that you can do to help them and take it away from them. Which we would in a heartbeat…They don’t see the “mental” toll that it takes on Jaxon, he always has the biggest smile, but there are times he just struggles and has off days. Some days he is so upset and doesn’t understand why he can’t *in his words* be normal. Of course we always reassure him and tell him that EVERYONE is different in their own way and that he has things he can do that other kids may not be able to do. I honestly don’t talk much about the mental stuff that comes with Duchenne because it honestly breaks my heart, and I truly don’t think people realize that Duchenne isn’t “just” a muscle disease. It’s way more than muscles being weak. It’s just way way more than that. And these things will not define him and will not keep him down long. He’s honestly (not just saying it because he’s our baby boy) the STRONGEST, the most resilient, the most loving, just all around the most amazing kid I’ve ever met. This boy has so much love from him as we do also. WE WILL KICK DUCHENNE MUSCULAR DYSTROPHYS ASS! 💚

So at the end of the day please be kind to everyone, you honestly truly never know what someone is going through. Just because someone handles it well doesn’t mean it’s not heavy. Just because you see them smiling or laughing doesn’t mean they aren’t falling apart on the inside. Just. Be. Kind. 🥹

09/07/2023

Today is Duchenne muscular dystrophy awareness day and the strongest boy that we love will our whole heart needs a cure… ❤️ We love you so much Jaxon! You’re honestly our superhero

Raising awareness for everyone who is battling Duchenne muscular dystrophy and all the families who are battling it with them.

09/06/2023

It’s safe to say we love Jaxon’s school so, so much!!

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09/02/2023

The strongest boy… He keeps this smile on his face through it all. 💚

You are so so very loved, Jaxon

08/28/2023

If you haven’t checked out “Laughing through the tears” blog you need too, especially if your a parent to a child with Duchenne muscular dystrophy. 💚 So many of her stories are so relatable, I could read her blog all day long!

by Jessica Rownd Jessica Rownd has two boys: one with Duchenne Muscular Dystrophy and one without. She is a great advocate in our community, blogging her life experiences and collaborating with man…

08/27/2023

These pictures are just some of my favorites from Jaxon’s February 2023 Disney world make a wish trip, so big shout out to Make-A-Wish America for making this happen for our boy and our family, we got to stay at Give Kids The World (if you haven’t checked them out, you need too) literally the best place on earth! And they were the most genuine nicest and most amazing people there! I can’t thank them enough for everything. They were the best and so welcoming and loving.

Honestly it was the best trip and we had so much fun…of course he got to be there on his birthday (give kids the world gave him presents and a birthday cake!!!!) such a lucky boy! We had so many laughs, so many memories were made and I wish we could go back and relive it. Jaxon got to make his own light saber, he got to meet Mickey Mouse, Winnie the Pooh and Tigger sang him happy birthday, we rode rollercoasters… and SO much more!! We got to go to magic kingdom, universal, Hollywood studios, animal kingdom, sea world, the crayola experience.

Jaxon still talks about how much fun he had. He already been wanting to go back again!

Our hearts were and are still so full for Jaxon that he got this trip 🥹💚 Looking back at the pictures still make me so emotional and just so happy.

08/27/2023

Our boy is so so loved. Seriously the amount of love our family gets is amazing. So blessed 🫶🏻💚

Thank you to everyone for letting us know how important our little family is to you and coming out to spend yesterday evening with us, good food and even better company! Missed the ones who had planned to come and couldn’t make it. We love each one of you!!

08/26/2023

For those who don’t know me, I’m Nickole, or to Jaxon, auntie Kole. And the stinker with Jaxon, is my son, Reid!

These two have been thick as thieves since day one. There is a very obvious age difference between them. I have had a difficult time finding the proper ways to explain all of this to a three year old. While this page isn’t about me, I created it with the intention of it being interactive.

So let’s use this as an opportunity for conversation and discussion!

How can we gently educate children on topics as heavy as this?

We love insight from ALL parties. 💚

08/24/2023

We want to THANK YOU all so much for all of the follows, likes and support on our Brave like Jaxon page!! We are so thankful to be able to share our story and Jaxon’s journey being diagnosed with Duchenne muscular dystrophy and to let others know that are experiencing the same diagnosis with their child, a family member who has it and someone who has it themselves that they are not alone and have so many people to rally around and with them! 💚

Thank you again from the bottom of our hearts.

08/23/2023

I hope everyone enjoyed the cooler weather this morning! I know we did. 😍

Just wanted to post and say a huge THANK YOU to the people who have started following along on our journey! 🥹

Also wanted to post a reminder for anyone interested in entering or attending the cruise in! 🤩🥳

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08/23/2023

A Predictable Environment While Duchenne Muscular Dystrophy is widely known as a progressive muscle weakening disease, the effects of Duchenne don’t stop there. It also affects the brain, emo…

08/22/2023

https://facebook.com/events/s/-brave-like-jaxon-car-cruise-i/221228813883332/

08/22/2023

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08/21/2023

Hi everyone, we’re the Danet’s! I am Britney, my husband is Corey and we have been married for almost 7 years. We have 3 beautiful children, Jaxon, Laine, and Cecilia. We found out we were pregnant with Jaxon right out of high school. Scary right? We were still kids ourselves. What we didn’t know was that, he would save us in so many ways.

Jaxon is just like any little boy, he loves trucks, cars, dirt, playing outside. It was when Jaxon was around 3/4 years, that we noticed he was having an increasingly harder time navigating stairs, swinging, and doing other day to day things. We weren’t sure why, and honestly we thought it was something he’d grow out of. We found out we were expecting again and in June 2019 we welcomed Laine into the world. We were so in love with him, he was the happiest boy.

On October 11, 2019, our whole world shattered. We got a call from the babysitter, and just like that Laine was gone at a short 4 months old. I never imagined experiencing this kind of heartache. It was a long time before we found any sense of normalcy. We realized quickly life doesn’t stop, even for us. Our village rallied behind us though, and they helped us navigate the profound loss we were experiencing.

Fast forward to 2021, we found out we were pregnant with our 3rd baby, our rainbow baby. Less than a month before Cece’s arrival, Jaxon had a well visit, at which his pediatrician referred us to an orthopedic specialist, as they were concerned about his developing mobility issues. When we went in for the ortho consult, they did scans and physical assessments of Jaxon and then the doctor requested to look at Jaxon’s calves. Following his exam, he looked at me and said “I’m pretty sure he has a type of muscular dystrophy.” We were referred to a pediatric neurologist at VCU to follow up. We were terrified and truly unsure of what to expect.

March 12, 2022, we had our baby girl. Everyone was just so in love and Jaxon was over the moon to have a baby sister.

Two weeks later, Jaxon had his first appointment at VCU. I was at home with a brand new baby, so Corey took him. He called me following the appointment and was so quiet. When asking how it went, through his cries he said “they did blood work but are pretty sure he has Duchenne Muscular Dystrophy.” Since being diagnosed, there have been many ups and downs. We’re renovating our home to make it more handicap accessible and navigating life one day at a time.

Now we’re here. To share our story. To send a message of hope. To find strength in each other. If you’ve made it this far, thank you. We hope you will follow along for our journey. We hope to show the world how to be brave like Jaxon. 💚