For the past five years, life has been completely turned upside down for Gert-Jan van Dooren and his family. From one day to the next, the father of six no longer has the ability to speak and is almost impossible to walk. Through crowdfunding, Ralton resident Bianca Dufour, Gert-John's wife, is raising money for a new treatment that can be carried out in the US: “It's our only hope at the moment.”
Because Gert-John, despite his positivity and courage, is getting worse by the week. After much investigation, it became clear that the former IT employee at Carmel College Foundation was suffering from ME (fatigue disorder) and POTS. It disrupts brain functions. As a result, he cannot tolerate stimuli such as light, sound and touch, and he spends 23 hours a day in bed.
Expensive treatment not reimbursed
As the expensive treatment is not reimbursed by health insurance, the family is doing everything they can to raise a total of 74,000 euros: “The treatment is new and we always follow the hype when it comes to developments like this in the Netherlands. My husband is 60 and if you want to do something in your life, you can't wait too long. Science-based research shows that treatment in the US is more successful for other conditions, such as long-term covid. This condition can be compared to Gert-John disease.
Life has turned upside down
Gert-Jan's daily complaints of muscle weakness, palpitations, headaches, food sensitivities, concentration problems and a very high heart rate have completely changed his life and the lives of his family. “Instead of always doing everything together, now you have to do everything alone,” says Bianca. “I also do all the care, it's very serious. Your life is dedicated only to this. You can't plan anything, you can't do fun things anymore, and the kids can't do anything fun with their father. The only advantage is that he's always there, the kids can always contact him.
Auspicious evening in Deepanveen
In addition Funding at the meeting Set up, the family also organizes other activities. For example, earlier this year there was a successful oliebollen campaign in which friends, family and colleagues offered to help. In conjunction with a raffle, more than a thousand euros were raised. On February 17, a benefit evening will be held at the Hof van Sallen in Diebenwein: “Our friend and singer René Bishop from Deventer will organize it and perform that evening. There will also be a DJ and I'll be doing something with my niece because I'm from music too. We look forward to a fun evening with a great audience. The more people come, the better the harvest!''
Be confident in others
With the flight already booked, Gert-Jan became the first ME patient from the Netherlands to receive treatment in the US. The process takes a total of four months. Bianca: “Besides helping my husband, we will also give hope to others who are in hopeless situations. If we can give them hope that something will or will happen, it will be worth a lot to us.
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