Mosaic triploidyEric Heimermann and the challenges of living with a rare condition

Christophe Hochard
Faced with many developmental issues, Eric was diagnosed at 9 years old with mosaic triploidy, a rare condition affecting 20 people. His mother, Betty, delves into the many challenges that they went through as a family.

Born in 1989 and diagnosed in 1998, Eric Heimermann’s condition has led to many difficulties in life. He is now 35 years old and apart from being overweight and having unusually small hands and feet, there are no outward signs of the rare condition known as mosaic triploidy.

“Up until he was three, Eric was actually underweight,” his mother, Betty Heimermann, explained in an interview. “He didn’t have a natural sucking reflex, so feeding him was difficult. We had to use bottles with an enlarged opening in the teat, otherwise he couldn’t drink the milk. He was only able to swallow when I stimulated his cheeks and jaw,” she added

Betty, explains in conversation with RTL that he was first thought to have Prader-Willi syndrome, as he exhibited most of the symptoms of this condition, except mental disability.

However, after contacting an association in Belgium, Betty was able to meet a doctor who gave the correct diagnosis, namely mosaic triploidy. Some common features of this rare condition include growth delay, delayed development, learning difficulties, low muscle tone, asymmetrical body and/or face, unusual features of the hands and feet, truncal obesity, and dysmorphic facial features. These may vary from individual to individual.

Early childhood

As a kid, however, other symptoms began to emerge, as Betty recounts how her son was unable to do many of the things that other kids could at his age. This posed many difficulties for his parents, who usually received advice from other parents who were unaware of his condition. With time, the family was faced with the undeniable reality that Eric had disabilities. But the uncertainty of his condition worried the family, as they did not know where the problem lay, according to Betty.

Betty explains that they compared Eric with other children of his own age. His sister, Liz, is two years younger than him, but she served as a model for Eric, as he learned how to crawl up the stairs and to pull himself up with a chair by imitating Liz, according to Betty. At that time, Eric was 3 to 4 years old.

Puberty was long and challenging for Eric, something that the doctor had already warned her of, states Betty.

School: Hard times

Eric was met with much misunderstanding from school staff, according to Betty. She explains how school personnel blamed her for his problems in school, followed by even worse accusations. She recounts how she experienced feelings of helplessness and loneliness at that time.

Eric’s fine and gross motor skills were not at the same level of development as children of his age, as shown by his inability for craft activities such as making patterns or cutting paper with a pair of scissors in kindergarten. Because of this, Eric suffered bullying despite trying his best, leading to much frustration in the family, according to Betty. On top of this, it was determined that Eric also suffered from “petit mal” epilepsy, now known as absence seizures.

His sister Liz also experienced bullying, as other kids called her “dumb Eric’s sister”, as they attended the same school in Redange. This verbal bullying was for Betty one of the worst things she experienced, she states.

Current lives

Nowadays, Liz, a mother and child care worker, is specialised in care for children with disabilities, focusing recently on children with autism.

This November will mark the third year of Eric’s residence in the Tricentenaire home in Heisdorf, an association committed to taking care of people with disabilities faced with difficulties in their daily lives. Eric works for four hours per day at the Education Ministry under the disabled employee status.

He regularly pays visit to his family in Niederpallen at the weekend, with his dog Simba eagerly waiting for him. Although his life is faced with many challenges, Eric tries to enjoy life as much as possible, his great passion being photography

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