Turning a condition into a mission

Posted by Hogne Ulla on 03-Oct-2018 16:20:45

Interview with Stefanie De Jonghe 

Childhood epilepsy has a huge impact on daily family life. It also challenges your feelings as a parent. Stefanie De Jonghe, chairperson of Steunpunt Kinderepilepsie - a Flemish non-profit organisation focused on childhood epilepsy - knows what she’s talking about. Six years ago her daughter, Lenie, was diagnosed with a severe form of epilepsy. Stefanie gives us an honest and touching account of her daily family life and tells us more about the Steunpunt Kinderepilepsie’s mission and activities.

The impact of childhood epilepsy on daily family life

Epilepsy affects your family life in various ways. It influences you financially and socially. It places you in a somewhat misunderstood area. It plays with your feelings as a parent and can be a burden for brothers and sisters too.

The economic burden of epilepsy

Photo: Thomas Sweertvaegher

Being constantly in and out of the hospital is not only a taxing experience mentally, but it also has a financial impact and this is most true when you are in a very acute phase of poor health. It’s also not uncommon for one parent to stop working or work less. This became the reality for Stefanie and, as a result, the family had to budget differently.

On top of having to organise yourself differently as a family come all the medical costs. But Stefanie puts the latter in perspective, “in Belgium, we are pretty well taken care of with good medical coverage and reimbursements for consultations and treatments. Furthermore, some people have access to hospital insurance plans which provide additional coverage. Elsewhere this is not always the case.”

Struggles with the outside world

In the early days and in severe phases of epilepsy especially, it’s commonplace to find yourself less involved socially. Social isolation results from, among other things, a certain lack of understanding by the world outside epilepsy, “people often have a hard time grasping chronic illnesses,” Stefanie continues, “in the beginning, everyone asks questions such as ‘how are things going?’. As time goes by and people notice that epilepsy doesn’t go away or even worsens, that question falls away. Everything has to be positive, everything has to be ‘healed’. People do not understand why Lenie has had epilepsy for six years now, why she doesn’t get better. It’s not easily understood.”

This misconception is often accompanied by a lack of recognition - or even acceptance. It’s difficult to ‘see’ that a child has epilepsy. How do you make it clear to the outside world that the child's brain is ‘sick’ and that that sickness is often severe? How do you explain to them that you as a parent are anxious and insecure? “Lenie recently had a severe seizure in the car. Since then I have become afraid to take Lenie out driving. People do not always understand my sudden fear and why I think and worry that it will happen again. It’s difficult to understand it without going through it once on your own,” says Stefanie.

“How do you make it clear to the outside world that the child's brain is ‘sick’ and that that sickness is often severe?” 
                                                                        Stefanie De Jonghe  

Siblings and their development

Epilepsy within the family also influences the development of brothers or sisters and your feelings as a parent. For example, Stefanie regrets that Lenie's brother, Ward, must grow up with worried parents, getting a somewhat different kind of attention, “it’s not positive for his development,” says Stefanie. At the same time, Stefanie sometimes feels guilty, because Lenie soon turns thirteen and everyday activities, such as taking a bath or biking to the shop, are not straightforward things to do. “Ward, who is only nine years old, is being raised much more independently. He bikes to the music school and more or less makes his own plans. The realisation of these differences is sometimes painful. It does not fit with how I had imagined or wanted my children to grow up”.

Stefanie's mission: Steunpunt Kinderepilepsie. What and why?

Stefanie does not work anymore, at least not in the traditional sense: she doesn’t have a full-time paid job. However, she puts a lot of effort and time into her role as chairperson of Steunpunt Kinderepilepsie.

Within the initiative, she has a clear mission: providing support to parents of children with epilepsy. The organisation does this in various ways. In the first place by bringing parents into contact with each other, as people with a shared experience. This is through discussion groups, events, and trips for the whole family or just for the brothers and sisters of children with epilepsy. These are all offered for free thanks to fundraising. “The threshold to speak up about the condition is already high enough,” Stefanie says, “as Flemish people, we’re not the most talkative. To talk openly about life with epilepsy you need to cross some barriers.”


That’s why the initiative constantly explores new ways to facilitate and support interaction, “we review the formats of the discussion groups and have recently started a project to set up a unique babysitting service.” The latter requires a lot of preparation: from the mapping out of administrative matters and making contacts with numerous caregivers, to organising and attending meetings about the whys and hows of the service, the approach to possible problems, and more. “We hope to have the babysitting service ready to launch by the end of 2019.”

Raising awareness and building support

In addition, the organisation wants to raise awareness about childhood epilepsy. It is hoped that shared understanding and recognition will generate support from which the non-profit organisation can raise vital funds, help to find investors and win financial support. More money means more resources for research. More research means a greater chance that a cure might even be found for epilepsy. Although a cure would make the initiative surplus to requirements, Stefanie doesn’t mind at all, “how great would that be?”

Does any of this sound familiar to you?

Does Stefanie's story sound familiar? How does childhood epilepsy influence your family life? Do you recognise the many challenges and dilemmas? How do you deal with the financial impact and the social isolation? Do you also want to share your story about the life with epilepsy? Please send us your stories, we'd love to read them! You can send us as much detail as you like, or leave your story anonymous if you'd prefer.

Thanks to Stefanie for sharing her story and give great meaning to this blog. More info about her organisation and it's mission: www.kinderepilepsie.be (Dutch).

Why we do what we do

1 in 3 people with epilepsy suffer from uncontrollable seizures despite medication. We believe current digital technologies are able to create a massive impact on the daily life of people with epilepsy. At Epihunter we create digital solutions to make epilepsy matter less at moments that matter most. Our first solution is for people with silent, difficult to notice absence seizures.

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Photo Stefanie: Thomas Sweertvaegher

Topics: absence, epilepsy, unsteady agenda, uncertainty, impact on family, support, living with epilepsy, familiy, support group, awareness