"Basically, we are very pleased with how things have gone so far. We are very grateful that we were given the chance to have Luis operated on in the USA. We hope that this new medical approach will lead to success," says Andrea Dautz.

Luis suffers from the rare disease PLE (Protein Losing Enteropathy, painful loss of protein through the intestines). The last hope for the critically ill boy from Geislar was therefore this minimally invasive treatment by the team of specialists at Nemours Children's Hospital in Wilmington. The two interventions were performed endoscopically in the intestine and are intended to help prevent protein from being excreted through the porous small intestine. The current study results give hope: there are improvements in about 70 percent of the interventions performed so far. The U.S. doctors have developed a surgical technique that is unique in the world.

Luis' first surgery brought a surprising discovery. Doctors did not find any perforated areas in the intestine, which would have been usual. "Instead, they discovered a larger hole at the transition from the stomach to the duodenum. This necessitated the second surgery because a special needle had to be procured," his mother said.

After returning to their home in Geislar, other health problems presented themselves. First, Covid-19 and a gastrointestinal virus gave the family a hard time. "Luis in particular was badly affected. Carnival was largely cancelled for us," says the mother. Now things are back to normal at home.

"Many neighbours and friends now approach us and want to know how our trip went. All we can say so far is that probably the second operation was not really successful either," explains Andrea Dautz. It has become clear to everyone involved that the disease and its consequences are much more complex than previously thought. "One root cause in the intestinal area probably does not exist. But this insight is very important for all subsequent treatments," says Luis’ mother.

Luis' parents don't have to reproach themselves for not having taken advantage of this opportunity. The U.S. doctors gave the family good tips and ideas for back home, she said. "For that reason alone, the mission was successful. We will stay in contact with the doctors in Philadelphia," says Andrea Dautz. The goal now, she said, is to further investigate and treat the lymphanomas.

The willingness to donate in the region was enormous. After about six weeks, around 370,000 euros had been raised via two donation portals from around 5500 donors. And how much money did the trip and operation cost? "We haven't been able to do a final cash check because we don't have all the invoices yet. We have already paid for the two operations in the USA," says Andrea Dautz.

But the parents already know that there will be money left over from donations. In agreement with the Fontanherzen association, this money will be put into research in Germany. "The goal must be to set up a centre of excellence that takes care of children who were born with half a heart - like Luis," explains Andrea Dautz.

If you want to see how the family is dealing with Luis' serious illness, you will have the opportunity to do so in April. A ZDF journalist accompanied Luis and his family for a while and produced a documentary. According to Andrea Dautz, the broadcast date will be at Easter. The exact date is not yet known.

(Original text: Holger Willcke / Translation: Jean Lennox)