But unfortunately appearances are deceptive: Luis is life-threateningly ill. The family from the Geislar district of Beuel fights for his life every day. The four-year-old suffers from the rare and insidious disease PLE (Protein Losing Enteropathy). His health is deteriorating rapidly. He needs surgery on his lymphatic system as soon as possible.

Treatment in the USA promises relief

For several years, doctors in the USA have devoted themselves to the interdisciplinary treatment of these agonising, life-threatening complications associated with lymphatic malformations, gaining the most experience in the world.

At Nemours Children's Hospital in Wilmington, a minimally invasive treatment is performed endoscopically in the intestine. It helps to prevent protein from being excreted through the intestine. The short-term results currently available give hope: there are improvements in about 70 percent of the procedures performed so far.

Significantly reduced oxygen saturation

For Luis and his trip to the USA, it will be necessary to create special conditions, as his physical condition and the pressure conditions in the aircraft could otherwise lead to unpredictable problems during the flight.

"Luis has a significantly reduced oxygen saturation in his blood. It is usually only 78 to 83 per cent for him. Healthy people normally have up to 100 per cent. During the night, there is a further drop in saturation every now and then and thus a need for oxygen," explains mother Andrea Dautz. Even though the intervention is unfortunately only a treatment for the symptoms, the Dautz family hopes to gain time for Luis. Time in which research and interest in this terrible disease can progress.

Cardiologist from Cologne advises treatment in the USA

Luis' health insurance refused the treatment abroad in the first step. The parents have lodged an appeal against this. "However, time is running against Luis. He has to be treated as soon as possible to have a chance," says Andrea Dautz.

Cologne paediatric cardiologist Dr Dieter Koch, one of the doctors treating and advising the parents, explained the urgency to the GA: "In Europe, the disease cannot be treated successfully at the moment. We have no therapy package to offer. So far, almost all attempts have been unsuccessful. We unfortunately lack the expertise.“

Koch strongly advises parents to seek treatment in the USA because colleagues there have successfully applied the new procedure at least 20 times. "I sent another patient to the US clinic in 2021. The therapy had to be repeated again at a later date, but today my patient is leading a tolerable life again," says Koch.

"Argumentation of the health insurance companies is wrong"

Unfortunately, German health insurance companies do not yet recognise the treatment method in the USA, Koch said. "Our health insurance companies are stiffing on the forms of treatment in Germany because they are much cheaper, but nowhere near as promising. In my opinion, the argumentation of the health insurance companies is wrong, because usually half of the children suffering from PLE do not survive the first five years after the onset of the disease," says the paediatric cardiologist.

The journey and the treatment present the Dautz family with an almost insurmountable financial hurdle. "We can't do it alone. And by the time we might have convinced the health insurance company, we will have lost too much time," the mother worries.

Fundraising campaign launched

Together with the Fontanherzen association, the parents have launched a fundraising campaign to finance Luis' transport and treatment. Up to 350,000 euros are needed for this. If the campaign generates more money, the Dautz family and Fontanherzen e.V. want to invest in establishing the American treatment method in Germany. Fontanherzen is the Germany-wide non-profit association for several hundred people with half a heart, the most severe congenital heart defect.

Fontanherzen is now calling for donations for Luis on Germany's largest donation platform Betterplace.org. The campaign has been running since the end of November. So far, almost 3100 donors have raised nearly 166,000 euros (as of Tuesday). "We are incredibly moved and touched by this. This willingness to help is overwhelming," say the parents, Andrea and Christoph Dautz, who together with their daughter Mora (eight years old) and other helpers lovingly care for Luis - every day and almost around the clock.

The everyday life of the entire family is strongly influenced by Luis' illnesses. And yet there are always small rays of hope every day, because the four-year-old is strong and wants to live despite his extensive limitations. Luis is just learning to read and write. He loves to learn new things about animals in the wild.

Those who want to financially support little Luis' journey and operation can make their donation via the internet platform www.betterplace.org, keyword: "Please, help Luis!".

(Original text: Holger Willcke; Translation: Mareike Graepel)