Support Kaden's Surgeries Due To Rare Bone Disease

Shelia Juarez is organizing this fundraiser.

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Kaden is 9 years old. He has a rare bone disease called multiple hereditary exostoses (MHE). This disease causes multiple bone tumors to form on his bones. He currently has too many tumors to count. The tumors have caused his bones to bend and become unstable in their joints. His radial bone is currently trying to move out of the elbow joint and will cause him to lose all mobility of his arm. Also, his shoulders are being winged (flared) out by the tumors and the tumors in the inside of his shoulders are crunching with his ribs, which will push his shoulders out of socket. He also has one on his cervical spine. They found during the MRI. It was have to be added to the first surgery. All of this is painful for him and happening currently. He has these tumors from his neck to his feet.

He will have to undergo three extensive surgeries this year. The first will be March 11, 2025, and will involve both arms and both shoulders, and breaking his arm and adding rods in his arms to straighten the bones, which will stabilize the wrist and elbow joints. His second surgery will be on his legs. He is having numbness and tingling due to the tumors pushing against nerves and tissues, and his hamstring is getting caught on the tumors, causing him to be unable to straighten his leg until it jumps back (this prevents him from playing). The third will be the removal of a tumor on his cervical spine. This is to reduce the chance of serious damage as well as relieve neck pain.

We live in Mississippi, and none of the doctors here or close to here are experienced with this disease at this scale. We will have to travel to the MHE center at the Paley Institute in West Palm, Florida. We will have to stay there for weeks while he receives physical therapy and his healing is monitored.

These are just surgeries he has this year. He will have many more throughout his life. The tumors grow as he grows and new ones can form at anytime until he reaches adult hood.

update: After the MRI they found a tumor on his cervical spine as well. Due to the location of the tumor on his cervical spine (neck) that surgery will have to be a separate third surgery. They will do another evaluation adding the spine team in while we are there for surgery in March to determine should the lower extremities or neck be second and the other the third surgery. Altogether he is over a 100 tumors.

added: these surgeries were completely unexpected. He has been to children’s hospital in Ga, MS, and AL and they are said there wasn’t anything they could do but monitor them and remove easy to reach ones if they posed a problem and were far away from the joint. Kaden’s pain level increased and he is unable to straighten his left arm all the way. I then began reachers for different doctors and that’s when I found the MHE center at paley in West Palm Beach, Fl. His first visit was 01/03/2025 and all of this was found and requires these surgeries.

To the left, you’ll see what your lower extremities should look like. To the right, you’ll see Kaden’s. You can see that the top of his femur, which connects to his hips, is encased in tumors. The tumors are also present at the bottom of his femur at the knees and in the other bones of his legs. This year, he’ll undergo another significant surgery to support his leg’s growth and restore full blood flow. The tumors are pressing on nerves, tissues, and other structures, causing severe problems in his legs.

Even his ankles are affected by these tumors.

After his MRI a tumor has been found on his cervical spine. That explains all the neck pain he has had. It will be removed in a third surgery by a spine team at Paley.

insurance. Kaden does have insurance. The first surgery is estimated to cost about $6,000 out of pocket. Our primary reason for fundraising is the travel and the three-week stay in West Palm Beach, Florida. (He’ll only be hospitalized for the initial few days, assuming no complications.) We need to stay in a hotel for monitoring appointments, physical therapy, and the removal of his stables. We have to repeat this process three times just this year. The flight alone is quoted at $23,170.13. We’re considering driving down and taking the medical flight back home, which we hope will reduce the overall cost. If approved by his team of doctors.