“Our only daughter Meike was born in 2003 with some special external characteristics”, says Meike’s mother Ciska. “But it was only after a year and a half that the doctors determined that Meike had Kabuki based on those characteristics. The responsible gene had not yet been discovered at the time. It was a shock to us to realize that the vision we envisioned for our daughter would not come true. Her first year was especially tough. Because Meike was born without an anus, she had to undergo surgery in her first year and needed a lot of specific medical care. As parents, we went through a huge grieving process that first year and we were very worried about her. It was only when Meike was one and a half years old that we could really make contact with her. She grew up as a beautiful, bright, smart and happy child. Meike had an enormous imagination and preferred to play ‘airplane’ with all her cuddly toys. She was very strong verbally, had a large vocabulary and chatted all day long in her high, somewhat nasal voice.
Vulnerable and caring
Meike has brought us so much. Our daughter saw no color or disability in humans. Everyone was equal to her. She was always disarming, pure, sweet and always had an eye for the feelings of others. When a classmate was scolded, Meike would cry next to it. And at the butcher she also asked for a slice of sausage for mom and dad. Meike herself was never aware that with her intellectual disability she was different from other children. We realized that Meike would always be vulnerable and would never be able to live independently. So for the future we saw a solution in converting the garage into a small house for our Meike.
From her birth, we regularly visited the outpatient clinic of Dr. Stumpel in Maastricht UMC+ with Meike. Here she also had the opportunity to participate in research into growth hormones for Kabuki children. In December 2013, the day after Sinterklaas, Meike became ill. At first we thought it was a bladder infection, but on Christmas Eve we ended up with her in the oncology department of the Sophia Children’s Hospital in Rotterdam. She was found to have a tumor the size of a tennis ball between her kidneys and bladder. A very rare species, which is only found in 5 children per year. 75% of these children are cured. So with full confidence we went through a whole process with chemotherapy, major surgery and radiation. At that time I started a blog about Meike, which made many Kabuki parents sympathize with us.
Research
But despite all the treatments Meike deteriorated. She developed infections, fever, a high heart rate and was retaining fluids. On May 6, 2014 she went into cardiac arrest and was resuscitated, but unfortunately without success. Only two days before her death did I realize that this terrible scenario was possible. She just turned 10. After Meike’s death, the doctors asked if they could do scientific research on her body, to learn from her. That was not a difficult decision for us. In the meantime we had gained a lot of respect for all research and science. After all, they have also pulled out so much to make Meike better. And that was possible because other people once also donated their bodies to let science learn from it. We are very grateful for that.
We agreed with Dr. Stumpel that she would keep us informed of the results of tests on Meike’s tissue. At a meeting with Kabuki parents last year, we were told that there was no relationship between Kabuki and Meike’s rare cancer. That was little consolation for us, because Meike’s cancer was pure bad luck. But it also confirmed to us that we and the hospital had really done everything we could. Of course we were also relieved for all those other Kabuki parents. Their children are therefore not at extra risk. Fortunately, Meike was able to give the Kabuki parents that answer.”