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Located: Netherlands

Symptoms: Acute myeloid leukemia, Big head, Constipation, Developmental delay, Epilepsy, Fear of loud noises, Learning disabilities, Overgrowth (204 cm), Signs of ADHD, Signs of autism, Testicles had not descended, Trouble talking


This is Damion. He is 21 years old. He was born on September 13, 1998. We have known since September 20, 2016, that he has Tatton Brown Rahman Syndrome. We always thought there was more to Damion than what the doctors knew back then. Damion was very tall, spoke badly, had signs of ADHD, and had autistic features. Damion’s testicles had not descended and he was operated on when he was five years old. All the doctors said he is a boy with an intellectual disability. He was always tired and always had black circles under his eyes.

When he was eight years old, they did a chromosome test. Nothing came out of that. We then went back to his neurologist, and at my insistence they did a sleep EEG. We should have waited three weeks for the results, but after the examination we had to see the neurologist right away—well, then you know that something is not right. The neurologist told us that Damion constantly had epileptic activities in his brain during sleep and was therefore always tired. Damion was not potty trained at night either, and we thought he was just a little slower in that, but this was because of the epilepsy. Medicines were prescribed and we had to come back six weeks later.

During the appointment six weeks later, we were asked how he was doing. We said that we thought it was going well since we had never seen Damion have a real seizure.

His medication remained the same and we had to come back three months later. Shortly after that we went on holiday to the Belgian Ardennes, where we saw an epileptic seizure with him for the first time late in the evening. We discovered this because Rob, our oldest son, was sleeping in his room and woke up.

We went back to the neurologist a few days later and he then prescribed other medicines, which he still uses today.

Over the years we have had quite a few doctor appointments and everything we brought up was pretty much dismissed as if we were overprotective parents. For example, his hands were always cold and blue, but according to the doctors, some people just suffered from that.

Damion also had a lot of anger attacks. We were then referred to a psychiatrist. This doctor examined Damion and he wanted to prescribe medicines, but we did not want this. When Damion was 17 years old, we were asked if we wanted to participate in a gene study. We said yes to this in the hope that something would come out.

Nine months after the examination, we had to go to the clinical geneticist for the results—this was on September 20, 2016. We actually assumed that nothing would have been found again. But we were told that he had Tatton Brown Rahman Syndrome. Almost nothing was known about the syndrome in the Netherlands and we got all the literature that was available about the syndrome in English. There were also congenital heart defects associated with TBRS, and when I started talking about it, the doctor said if Damion would have had that, they would have discovered it long ago. Well, I wanted to investigate anyway. On November 5, 2016, we were allowed to see the cardiologist, who conducted an ECG and an ultrasound of his heart, and we were told that day that he had a hole in his heart, a leaky valve, and heart rhythm disturbances. My first reaction was, how could they have missed this? And I burst into tears.

We were then referred to the Erasmus MC in Rotterdam. Damion had open heart surgery on March 24, 2017. He’s had postoperative complications, pneumonia, and his heart was racing so they had to do a cardioversion two weeks after surgery. Damion was getting better and better and his attacks of rage were also rare. We think he had anger attacks because of pain or discomfort in his heart.

Damion needs daily help with showering and getting dressed. My husband Tjeu always showered him and saw that he had some strange bruises on his feet and legs. This was early July 2018. We then went to our doctor with Damion on July 4. We had a blood test, and a day later we got a phone call that we had to go to the hospital with him right away. Doctors were waiting for us. At the hospital, we were told that he probably would have acute myeloid leukemia (AML). We were told what might await us if he actually had AML. A day later, a bone marrow test was done and we had to wait until after the weekend for the first results.

On that Monday, we received a call that he indeed had AML and again we were referred to the Erasmus MC in Rotterdam. Damion was hospitalized there on July 11. He spent a total of 16 weeks in the hospital and had 50 days of chemotherapy and a donor stem cell transplant. Almost two years after the diagnosis, he is doing well.

Damion is always smiling. He enjoys playing darts and he likes to color and do puzzles. He also likes to help.

After the diagnosis of TBRS, I went looking for information about the syndrome, and I found the TBRS Community on Facebook. I signed up for the group. I am so happy to have found this group. You can ask questions, tell things about your child, and the most important thing I think is that you know that you are not alone. It’s a Family.

Written by his mom Nathalie.