Support Jordan's Medical Journey

This boy is my life. He is life. His laugh (the genuine one) fills your soul. It doesn’t matter if what he’s doing is funny, when he laughs… you will too. Since he was little he always wanted to help. Help in the kitchen, help the teachers, help at my office. Then he wanted to own his own business so he started selling rocks to the neighbor kids. When he first started struggling to keep up with the kids outside, he learned to bake. He earned money to buy everything he needed. Just so he could bake for the neighbors and my friends. He never asked me to buy anything for his business, he asked for ideas on how to earn money. Eventually, that became hard to do, and although he still loves to bake he doesn’t do it often. But, even with everything that is going on, he is the first to ask me how my day went. The first to ask if I’m okay or if I need anything. Jordan just wants to help people and make people smile. That’s my boy…. And here is his story!

Jordan’s journey has been rough, but the road ahead will be long and feels a little heavy sometimes.

Looking back, it was there, it always was there. But, everything could be explained away and was. Until December 2023, when Jordan became incredibly ill, resulting in multiple hospital stays over the next six months, and by Feb 2024 Jordan was full time in a wheelchair, with his shoulders subluxing and dislocating daily. Every doctor has a different theory, every doctor disagrees with the one before them. Jordan has seen his share of pain, has seen hundreds of doctors, and I don’t know how but this kid still smiles. Sure, the light is a little dimmer but truly this kid keeps going forward and never whines (he should but doesn’t)

In April, Jordan spent 21 days in inpatient rehab and regained the ability to walk. But he never regained strength in his hips, knees or shoulders. To date, Jordan cannot bend or squat. And his shoulders sublux 10-30 times a day. In fact, he sneezed last night and his arm fell out of the socket. Which he laughed about, and while it’s ridiculous and a little funny, that cannot be normal lol.

Although we were super excited that Jordan was walking when he started middle school, the excitement faded quickly, as he immediately began to struggle with keeping up, he lost his fine motor skills in his fingers preventing him from writing, and he couldn’t walk the distance or carry his own bag/laptop. So he was asked to withdraw from school in October 2024.

Since then Jordan has been homeschooled and spends his days at home, my office or traveling to doctors. He doesn’t see his friends much, but really there isn’t much he can do with them. The kids are all as sweet as can be, but it’s clear none of the boys know what to do or say to each other anymore. They try. Jordan gets a little upset about it, but he knows it’s just how things are for now.

One year and 3 months later and we have no answers, however we have some theories finally.

In January, Jordan has an appointment with an Ortho surgeon who specializes in shoulders. What was supposed to be an appointment to schedule his first surgery became a new door, a new journey. Dr Ben, the most amazing and kind doctor we’ve worked with, showed us his MRI, did a full work up and then said he would not be able to help Jordan YET. He believes Jordan has Muscular dystrophy, Beckers to be exact (possibly Limb girdle). Both are rare (3-6 people out of 100,000), and he needs a more comprehensive picture before he starts the surgery path. Afterwards, I researched a lot and honestly it makes so much sense. Physically you can see it in the way Jordan stands, symptoms match, and the stories of early childhood are a dead ringer for Jordan’s childhood.

Today, we had a 2nd opinion appointment with ortho of Shriners (telehealth) and she agrees with his assessment. She said his symptoms match, and that one thing is for sure Jordan had a very complex medical condition, that we will likely not find one facility to treat it all, but that they would like to help Jordan.

Therefore, we will be moving forward with treatment in South Carolina this spring. She would like Jordan to continue with the shoulder surgeon in Orlando, and she their South Carolina sports surgeon to address the instability in Jordan’s knees, hips and hands. We will also be seeing Genetics in South Carolina to work towards a diagnosis and treatment for underlying issues.

Jordan currently see Rheumatology, two ortho docs, Neuro, GI, PT, Heart, Genetics, psych and dermatology. Pretty sure we’re about to add an allergist as well. Spaced between Tampa, Orlando and now South Carolina.

we realize there has been signs since he was two. It’s hard not to internalize that. This kid has known so much pain, so many ER visits, hospital stays, missed school, stitches and even a broken nose. And it was all apart of the big picture. One that we just didn’t see.

As you can imagine, we are overwhelmed. Thrilled to FINALLY have doctors that are helping after an insane year of playing telephone between local docs, but nervous about the journey ahead. It is clear there will be a lot of traveling, doctors and surgeries ahead. While we do have insurance that will help with a lot, and Shriners to help with their medical costs, we will still have a lot of medical needs not covered, travel expenses, missed work opportunities and god knows what other costs.

I hate to ask, truly I do, but you never know how much anything and everything can help chip away at all of this. So, if you are able to help, please do. We know times are tough for everyone, so please only help if you’re able. If you’re not able to financially… your support, sharing, and prayers are sooooo appreciated and needed. We are so thankful for everyone who has continued on this journey with us. We pray for some level of peace for Jordan and hope that one day his future will seem a little lighter. Thanks for reading.