Rebel was born on the 5th of February 2016. Seemingly an extraordinarily happy and content baby. Yet although she was without doubt a cheerful baby, something just wasn’t quite right. After days of constant crying, we took Rebel to the hospital where, after numerous tests, nothing was found to be wrong. But she then began to get seizures, sometimes up to three times a day. We suspected epilepsy, but once again they could find nothing at the hospital. We continued to search for answers, and in the second hospital, the WKZ in Utrecht, the results of a new series of tests confirmed epilepsy. Rebel was having gelastic seizures, a laughter seizure that is caused by a condition in the brain. And not just any condition; Rebel has a tumour on the hypothalamus, a so-called hypothalamus hamartoma. This benign tumour affects the nerve and hormone system, causing increasingly violent seizures, up to 40 a day. One in 200,000 children is born with this tumour.
There is, with varying effect, medication available. But in terms of treatment, there are no further options available for Rebel in the Netherlands. Due to the position of the tumour, there is a chance of premature puberty, problems with emotion regulation, damage to the short-term memory and cognitive delays.
We are currently trying to determine which brain surgery would be most suitable for Rebel. Unfortunately, this is something that as a parent you have to research yourself. As Rebel’s condition is extremely rare, we are currently living on a knife-edge, in anticipation of what the best method of treatment is. This process takes a lot of time and the chances are that the eventual treatment will be very costly. There is also uncertainty as to whether our health insurance will cover the desired (and best) treatment.
We will do everything possible to ensure that Rebel can be operated on before her first birthday, which will keep the risks and consequences for her future life to a minimum. With the Rebel for a Cause Foundation, we are drawing attention to Rebel’s story so that she is able to undergo the necessary operation as quickly as possible. Even if we need to be a bit rebellious on the way.