Our daughter, Ella, was diagnosed with MHE when she was around 2. We had noticed a bump on her right wrist and thought she broke her arm. We had taken her to a doctor, and the doctor believed it was a bone tumor of some kind and said osteochondromas were the most common type. We were told just to wait and watch it before we did anything further.
Within a few months, it seemed like it doubled in size, and we began seeing the bumps in more places. We saw many doctors to try and figure out what was going on, and eventually we got the diagnosis of MHE.
At the time, there was very little information about MHE online, so finding a doctor was very difficult. We saw many well-known doctors in our state and the states surrounding us. However, not many of them had heard of MHE and weren’t comfortable treating her. We ended up finding a doctor that had heard of her disease and had seen it before. The doctor was very well known and ran the department at a large university/academic center hospital. We figured what he said was all that could be done. However, we ended up getting other opinions, and all the doctors we saw said there wasn’t anything that could be done and it was only going to grow back. They stressed it was too high risk to remove the tumors due to them being on the growth plates so it was pointless to have surgery. They said it was best to wait and see as long as we could.
So that’s what we did. She walked with a limp from the very beginning, and by the time she was 4, her limbs were noticeably crooked. As she got older, it only got worse and worse. The doctors just kept saying there’s nothing we can do and it’s just part of having MHE. My husband and I just accepted that and tried to raise her young, being able to accept it and handle adversity. We didn’t want MHE to stop her from doing stuff like normal kids do, so we put her in a lot of sports, and she always found a way to do it in her own way.
By the time she was 10, her limbs were very deformed, and she couldn’t write or move her wrist. It then got to the point where walking was very difficult for her. She had to swing her leg around like a circle to be able to walk. Her back began to curve due to the way she was walking and she was using completely different muscles to walk than she should. When she was around 11, it got to the point where there was nothing she could do, and she couldn’t physically do the things a kid should be able to do.
The osteochondromas had gotten so large that she had little to no range of motion and was having a lot of nerve pain. At every major joint, she had baseball-sized osteochondromas. The doctor had told us she was a major risk for drop foot as well.
The doctor said we could do surgery and see if we could improve her quality of life. She had around 4 or 5 surgeries. Her peroneal nerve grew inside a softball-sized osteochondroma, and she was having a lot of nerve pain from that, so the doctor wanted to take it out as soon as he could to prevent drop foot from occurring. The surgeon ended up taking out the top of her fibula, and had to cut a few ligaments. When she woke up from surgery we figured out she had drop foot and wasn't able to lift up her foot. The following surgerys, the doctor said he could only take out the very large ones as there were too many to take out and it was just a part of having MHE. So the surgeries didn’t really do much to improve her range of motion, the crookedness, and her quality of life.
By this time, she was 13, and we were desperate to help improve her life. That year, I saw that an MHE center was opening in Florida through a Facebook support group, and I wanted to see if anything else could be done for our daughter, as this would truly be the doctors who knew the most about her disease and saw it daily. My family flew out there as soon as we could, and for the first time our daughter was able to meet other kids who felt how she felt, and she saw she wasn’t alone.
The first thing Dr. Feldman told our daughter was that he could fix her. He could make her walk normal and be able to run again. He could straighten all her limbs, fix the drop foot, and get her fully functioning with surgery. He said she would also need a lot of physical therapy to learn how to use the correct muscles and fix the muscles that atrophied from how she walked before. But with surgeries and physical therapy she would be able to live a normal life and do what a kid should be able to do. This was truly a miracle to our family and something we never thought was even possible for her.
Our daughter has had more surgeries than I can count with Dr. Feldman, and the people/staff in Florida became our second family. Dr. Feldman did anything he could to make it easier on our family, and anything our daughter wanted to do, he made sure it happened. He did what no one else could and gave us hope when we didn't have any.
Ella is now 23, and is done with her big surgeries but can have more surgeries if she wants. She's still working on physical therapy but is already able to live a totally normal life. Her limbs are all straight, and she is able to walk/run straight with full range of motion. She’s able to go on hikes, play golf, work out, and do anything she wants to do. We never thought this was possible for our daughter.
He’s the reason she’s living the life she has today. Dr. Feldman was a miracle to our family and is someone we will never forget for all he’s done for our daughter. He’s so much more than a good doctor to us.
– The Nelson's
