Hanneke Gelderblom is a woman on a mission. In addition to being a talented physicist - she received the 2024 Minerva Prize for her outstanding contributions in the field of fluid dynamics - she is also a mother and caregiver to Meike. Her eight-year-old daughter has a rare disease that requires round-the-clock care and brings many concerns. Yet this is not a sad story, but one of strength, adaptability, supportive colleagues, and focusing on what is possible.
In the middle of our conversation, a sharp ringtone rings out from the bag of assistant professor Hanneke Gelderblom. Her phone, which she's been casually glancing at now and then, starts to ring.
"Well, here we go," she says, almost knowingly, before answering. A short call follows.
She hangs up and says calmly, "That was the ambulance service - Meike had a seizure at school. I have to go. Let's stay in touch to set up a follow-up."
And with that, she's gone, striding quickly toward her eight-year-old daughter Meike, who's just had an epileptic seizure.
It left a deep impression on me - as a mother of three healthy daughters, it hit home. For Hanneke, this is everyday life. On top of her work as a physics researcher and assistant professor, she's also Meike's primary caregiver. She's separated from Meike's father, and Meike spends sixty percent of her time with her. But the worry doesn't disappear when Meike is with her dad. Hanneke is always "on," ready to respond when the phone rings.
Dravet syndrome
Meike has Dravet syndrome , a rare condition caused by a genetic mutation. As a result, she suffers from frequent, severe epileptic seizures that are difficult to stop, her development is slower than that of her peers, and she has motor impairments. Only 250 children in the Netherlands have the same syndrome.
"Meike is a cheerful and sociable eight-year-old girl who loves to chat and make connections with people," Hanneke proudly shares about her daughter. A photo of a smiling Meike proudly sits on her desk in Cascade.
Preschool level
"She is making progress, but slowly. She currently functions at the level of a four- to five-year-old. She can communicate at a preschool level, knows quite a few words, and can write her name. Meike has very low muscle tone, which makes it difficult for her to walk long distances. She can manage short distances at home. For example, we use a special stroller when we go to a playground. She also needs help with many daily tasks, such as eating and getting dressed."
27 seizures in a year
"In the past year, Meike has had 27 epileptic seizures," Hanneke tells me the next time we speak. "As a result, the ambulance had to be called out twelve times, and the trauma helicopter twice. She's been urgently admitted to the hospital five times, but luckily, we live just around the corner. They know us well there by now."
She calmly lists the facts, accustomed to the reality that her daughter has a seizure about once every two weeks. Each time, it can take a different form, and that's the unpredictability of Dravet syndrome.
During a seizure, I stay calm and act. The emotional impact usually hits me later.
Assistant professor Hanneke Gelderblom
"Some seizures are manageable. I stay calm because I know what to do to help Meike. In a severe seizure, when Meike, for example, has trouble breathing, I feel sadness and fear, but I try to remain calm. The emotional impact usually hits me later."
The images of such a seizure can haunt Hanneke for a long time. "Fortunately, I have a good psychologist who helps me when it becomes mentally overwhelming. When the anxiety lingers and affects my daily life, I do an EMDR session. That helps me to calm down again."
Always on alert
At night, Meike is connected to monitoring equipment that keeps track of her. "If anything happens, I get an alert. It's exhausting always having to stay alert. The impact on both her life and mine is enormous. But luckily, my daughter is such a happy little girl-she finds joy in everything around her, which makes everything a little easier."
Triggers
Hanneke is always alert and ready for the subsequent seizure. "Sometimes I can see it coming. The seizures can be triggered by hot weather, lack of sleep, excitement, playing outside, crowds, or other stimuli. And sometimes, they come completely unexpectedly. I think everything is calm, and then a seizure happens anyway. It's a tough illness to deal with."
Stimuli are triggers for seizures, but that doesn't mean Meike can't live her life. "I'm constantly looking for the balance between keeping her safe and letting her have a good life. She loves school, and although it can lead to extra stimuli, I'm pleased she can go. Meike attends a school that specializes in the care of chronically ill children, particularly those with neurological conditions."
Combining work and care
Many parents of a child with Dravet syndrome end up quitting their jobs because the care their child requires is so demanding. The daily care consumes a lot of time and energy, and managing the care itself also takes up a significant amount of time. "I completely understand why people can't combine this with their job, but I'm a better mother to Meike when I can also work and take a little distance. "With the help of home care and the support of my social circle, particularly my parents, I can manage."
Her career as an assistant professor at the Department of Applied Physics and Science Education is demanding, but it also offers her much flexibility. "Of course, it's tough, and I often feel like I'm walking on eggshells, I won't lie about that. But the work is so enjoyable, and I have the flexibility to set my hours. When I'm called away because Meike has a seizure, I can catch up on the lost time in the evenings."
I'm a better mother to Meike when I can also work and take a little distance.
Assistant professor Hanneke Gelderblom
Droplets
Hanneke conducts fundamental research on the behavior of fluids on a small scale. "That's what I love about physics: you go back to the basic principles. I set up a camera on a droplet and study what happens to it, then create a descriptive model from it."
Together with the Erasmus Medical Center, she is part of a consortium working on how bacteria and viruses interact with the fluid droplets they live in. Think of the coronavirus, which spreads through tiny droplets.
She also collaborates with industrial partners to explore practical applications of this knowledge. "With ARCNL and ASML, I'm working on how liquid droplets splinter when you shoot them with a laser. And how can that be done as controlled as possible without contamination?"
I now grab an hour here and there, but I need more peace of mind for research.
Assistant professor Hanneke Gelderblom
Doing research takes a lot of time, dedication, and effort. With her home situation, it's not easy at the moment. "It's going well enough, but I can't deliver what my colleagues deliver. It isn't easy to find the focus for research. I miss the peace of sitting down with a problem, reading about it, and thinking it through. I now grab an hour here and there, but I need more peace of mind for research."
Focus on teaching
For this reason, she has decided to focus primarily on research within collaborations and on teaching. "I enjoy teaching. I get satisfaction from continuously searching for the best way to share my knowledge. It's special to witness how students develop and grow. It is even more enjoyable that our students are motivated and want to move forward."
Support from colleagues
Hanneke is grateful for the understanding and support she receives from the department, her supervisors, and colleagues. "The teaching teams for my subjects know I might be called away during a lecture. Before exams, I always let my colleagues know I may need to leave. They take over without hesitation if necessary, and I find that very special. I do feel guilty sometimes, because everyone is already so busy."
![[Translate to English:] Hanneke met Meike. Foto: Loraine Bodewes](https://assets.w3.tue.nl/w/fileadmin/_processed_/8/a/csm_Hanneke_Meike9%20-%20Copy_87d13df0b7.jpg)
Students and colleagues are thankfully understanding when I'm called away for Meike.
Assistant professor Hanneke Gelderblom
Her students are also aware of her home situation. "I always need to be available, so I keep my phone close by, even during lectures. As a teacher, that doesn't necessarily send the right signal to the students. That's why I now tell them I might get a call and have to leave. This has happened three times over the past year, and they respond with understanding."
Future
If one thing her life with Meike has taught her is to live in the moment. Still, she has some careful aspirations for her career at TU/e. "I enjoy it here, and I'm able to combine everything. I love mentoring PhD students and hope to progress to associate professor."
I've learned that being flexible is an important life skill.
Assistant professor Hanneke Gelderblom
As far as Meike is concerned, Hanneke doesn't dare to have too many hopes. "We've found our way. Of course, there's sadness, but I can also enjoy the good moments. I don't know the future; we'll see when we arrive. She's happy now, and she's where she belongs. And so am I. And in a way, it's also quite reassuring, because no one knows what their situation will be in five years. I've learned that being flexible is an important life skill."
