However, on 13 June, Henk and his wife Esther will take on a very different kind of challenge: climbing to the top of Mont Ventoux. Not for sporting glory, but for hope. Hope for a cure for the debilitating mitochondrial disease that affects Gerben, Esther’s youngest son, every day.
The climb up Mont Ventoux, which Henk will undertake with his wife and many other participants, is part of the Challenge Mont Ventoux, organised by the Join4Energy Foundation. The aim is to raise as much money as possible for the development of a treatment for mitochondrial diseases – a group of disorders that quite literally drain the energy out of life. In the Netherlands, two to three children are born with such a condition every week. Only one third live to see adulthood.
True perseverance
Since Gerben’s birth, it has been clear that his body does not produce the energy it needs. Henk: “Gerben is Esther’s son, and he has been an important part of my life for the past seven years. He has lived in a care centre in Almelo since he was 17. He comes home regularly, which is lovely, but also intensive in terms of care. When he’s home, we’re fully there for him.”
“I consider myself a determined person who doesn’t shy away from challenges. But the real fighters in this story are Gerben and Esther,” Henk says proudly. Gerben controls his iPad – his constant companion – using his nose and lips, and has a wide range of interests. “He’s cognitively bright but socially and emotionally much younger,” Henk explains.
“Gerben still wanted to visit the Pyramid of Austerlitz, the Space Expo in Noordwijk, and the Eise Eisinga Planetarium.''
Sadly, these trips are now too exhausting for him. So Esther and I visit these places ourselves and take him along via Facetime on his iPad.”
A final ascent
Esther was once one of the original initiators of Challenge Mont Ventoux. Gerben always used to join in. “At age nine, he was carried up the mountain in a backpack by former professional cyclist Rob Harmeling,” says Henk. “Rob was there as a coach and team leader for the cyclists riding to the summit for the charity. It was one of Gerben’s fondest memories. He felt as free as a bird and had a wonderful time! Everyone admired Rob for his effort – it took a real toll on him.”
Gerben is now 20. His energy levels have declined so significantly that he can no longer join this year’s event. “Of course, we’ll make sure he can be involved as much as possible via video calls.” Gerben receives most of his nutrition through a feeding tube, can barely move, and speaking is becoming increasingly difficult.
“His condition is deteriorating, but his will to live remains strong,” Henk says with sadness. “His once-bright eyes have not sparkled for a long time.”
Progress through research
A drug called Sonlicromanol is currently in development for Gerben’s condition. The pivotal phase 3 clinical trial is about to begin. However, this trial can only proceed if sufficient funding is secured. That is exactly why Henk and Esther are putting on their hiking boots and climbing the iconic bald mountain in southern France, along with a large group of walkers and cyclists. Incidentally, this will be the final edition of the Challenge. Future fundraising efforts will take other forms.
Watch the video about Henk's Journey here
A call to ICT colleagues
Henk would like to end with a heartfelt appeal to his colleagues at ICT Group: “Help us reach the summit – not just of Mont Ventoux, but of our mission: a treatment that can save lives. Anyone who wishes to support us can do so via our fundraising page. Together, we can make a difference for children like Gerben.”
You can support this initiative via Henk’s personal fundraising page: