Living with a chronic illness is not easy. In Ella-Marie's case, in addition to the physical problem, there is of course the mental challenge. Even though we have regular bureaucratic work, we are lucky to live in Belgium. Our medical system brings out a lot of top people whom we would like to thank.
#NoSponsor: This is effectively just a thank you for the professional help we receive.
Prof. Dr. Katrien Jansen
We have rarely encountered such an active-minded, humane and extremely intelligent doctor. It is thanks to Dr. Jansen that in those 7 years of misery we never lost hope. Again and again, she was ready, both at a routine check-up and in the event of a new setback. Again and again new medication was sought and new insights were communicated.
And as it really should be: a clear proposal was made based on the experience Dr. Jansen had. With an eye for the human, she still clearly indicated that we should take action. With her professional background, rational insights and based on the current situation, together we decided to have an operation in Utrecht.
If you ever find yourself in a pediatric epilepsy situation, we can only recommend that you do everything you can to be able to get her vision too.
HZA Swimming (Diane Van Uytven)
Sometimes normal goes a little harder. Especially if your left arm is not as strong as your right arm. Add to that the fact that using the left arm can trigger additional epileptic seizures and then you know that Ella-Marie wasn't exactly in the water like a dolphin.
Before looking specifically at Arduas, a big thank you to "Master Frank." Give that man a gold medal and 3 cups at once! With extreme patience, all the tricks in the world and the eternal smile, Frank made sure that Ella-Marie could finally swim a nice 100 m breaststroke. This does not go against the speed of a child with no medical background, but as parents we are incredibly proud and most importantly reassured that Ella-Marie is self-reliant in the water!
After Master Frank delivered his masterpiece, we had the opportunity to have Ella-Marie swim with the G-swimmers of Arduas. Diane, the eternally motivated person in charge, takes her job tremendously seriously. Thinking every day how each child can grow individually and wanting to get the best out of the team every day. It is so nice to see that children with a medical background get so much support to still develop themselves. Every week they enjoy being in the pool and every week Ella-Marie gets the chance to improve swimming technique thanks to teacher (and soon to be physiotherapist) Jana.
In the Arduas club a lot is done for these children. And that is heartwarming for the parents.
Akketuut
World famous in Heist-op-den-Berg. A wonderful woman, a top physiotherapist, an eternal optimist: Thank you Griet!
We have been regular customers for years and every time Ella-Marie goes in with a big smile. Most importantly: without Griet, Ella-Marie would not have been able to do what she is able to do now. Practicing on balance, stimulating gross and fine motor skills, practicing on clean writing (which is already better than the daddy's :-) ) and working on cognitive progress. This pediatric physical therapy has a tremendous reputation in Heist and far beyond...and that is more than justified!!!
Danspit
As soon as Ella-Marie could walk, she was also dancing. Mimicking TikTok videos via YouTube, making up dances to Spotify music, . she does it all.
And thanks to Danspit by teacher Wendy, Ella-Marie can also practice her dance moves every week and indulge in her favorite music! Even if the left arm doesn't cooperate for a while, teacher Wendy will help find a solution so that Ella-Marie can still join in her dance.
The dance school is still looking for motivated dancers, so be sure to check out their facebook account!
Psychologist Shana Hendrickx
An epileptic seizure can happen any minute of the day. At the time of writing, there are about 4 attacks per night and 1 during the day. Add to that the fact that a brain operation is coming up soon and you can understand that Ella-Marie also needs mental support. And we found that professional help with Shana.
With the patience of a psychologist and the love of a heart-warming person, Shana seeks ways to teach Ella-Marie how to live with anxiety. Out of the big magic hat were already conjured an extraordinary number of tools and they help Ella-Marie tremendously. Dealing with anxiety, but also being more assertive in life and self-development are on the agenda for every conversation.
Unfortunately, her success also has a downside. It is very difficult to find a place in the agenda at the moment!
Practice KeramieK
Sometimes school things are a bit more tricky. Some are better
at math, others better at language. And sometimes you need extra
help outside of school.
With Annelies Vivijs of Praktijk KeramieK we found the eternal
smile and the pure focus on the individual of the child. What we
found so special about this therapist is that Ella-Marie came out
with a big smile every time. Are you looking for someone who can
make your child much more confident, who always looks for the best
for your child and works in all kinds of fun ways? Definitely talk
to Annelies!
Institute Ms. Govaerts
It cannot be said enough. Being a teacher is a particularly challenging profession. And if you choose a job in special education, we can only say "chapeau".
In addition to highly motivated and talented teachers, the IMG in Heist has a wide range of additional support staff at its disposal. We can only be grateful for what these people mean to Ella-Marie every day. With differentiation in cognitive, social and motor areas, a beautiful path is being worked out for her. Thanks to this school, Ella-Marie works a little every day on her independence. Together we look for the best solutions for the future.
Apotheek Mortelmans (Pharmacy)
Ethel and her team always do their best to help us find the latest
and best medication. If we come up with something new, she will do
everything to have the medication available as soon as
possible.Always ready with advice and always helpful!
't Riemenhofje
Ella-Marie weighed an amazing 1.8 kg when she was born. With her 40 cm smallness, she began her life's journey fighting hard. And like almost every parent, after 3 months (yes, she weighed 2.5 kg then!) the moment came: time to go to daycare!
Even as a mom of a healthy baby, these are exciting moments. But the way we were taken care of by the team of social nurse Hilde Gysbrechts was worth gold. With all the love, An, Annelies, Ils, Joke, Tinne, Chris, Heidi, Christel, Nathalie and all the others went out of their way to help Ella-Marie recover as quickly as possible. The sheer enthusiasm with which Griet then prepared her for kindergarten made for a very good transition.
Our thanks to them are still on their website:
