Seriously ill child Five-year-old Luis from Geislar can go to the USA for surgery
Geislar · Christmas miracle or best birthday present? Whichever it is - for Luis Dautz from Geislar, who turned five on 2 January, the vital operation in the USA is getting closer and closer thanks to many donations the family received.
The Dautz family from Geislar will fly to the USA in January for the urgently needed operation on Luis, who is seriously ill. "For us, a Christmas miracle has come true. The many donations put us in a financial position to fly to Philadelphia and pay for the operation," says mother Andrea Dautz.
The fate of the boy suffering from the rare disease PLE (Protein Losing Enteropathy, agonising loss of protein through the intestines) has taken on an unexpected level of sympathy. "Since the first article appeared in the General-Anzeiger, the willingness to donate has increased enormously. But we have also received a lot of encouragement and sympathy," says a noticeably confident Andrea Dautz.
More than 5,000 donors transfer around 350,000 Euro
In just over five weeks, more than 5,000 donors have transferred about 350,000 Euro to the internet platform betterplace.org and to the account of the Fontanherzen association. "We are overwhelmed by this willingness to help. We never expected this. My husband and I don't even know how to thank these many people. It's good that we took the step of going public. We were very hesitant about this at first," explains Andrea Dautz.
When the aid organisation "Ein Herz für Kinder" agreed to pay part of the flight costs, the Dautz family booked the flights. On Monday, 16 January, mother and son will fly to Philadelphia in a special ambulance jet, a kind of flying intensive care unit. Father and sister will follow on a scheduled flight. Luis needs surgery on his lymphatic system as soon as possible, so the operation is scheduled for Thursday, 19 January.
High hopes for USA trip
For several years, doctors in the USA have dedicated themselves to the interdisciplinary treatment of these agonising, life-threatening complications associated with lymphatic malformations and have gathered the most experience in this field worldwide.
What awaits Luis in the USA? 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. "Luis has a significantly reduced oxygen saturation in his blood. It is usually only 78 to 83 per cent in his blood. Healthy people normally have up to 100 percent," his mother explains.
Four-week stay in Philadelphia planned
For now, the Dautz family is planning a four-week stay in the USA. "It may be that Luis will have to be operated on a second time. If this should happen, we will definitely have enough time for it," says Andrea Dautz. Daughter Mora has been exempted from classes at the Arnold-von-Wied School in Schwarzrheindorf for this time.
When all the bills have been paid, the Dautz family will take stock of the cash. "We will use the money that is then left over, in coordination with the Fontanherzen association, for research and improvement of the surgical technique in Germany. The USA method must be established in Germany," Dautz said.
As reported, 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 must be treated as soon as possible to have a chance," says Andrea Dautz.
Health insurance does not pay for stay abroad so far
The Cologne paediatric cardiologist 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.
Unfortunately, German health insurance companies do not yet recognise the treatment method in the USA, Koch said. "Our health insurance companies are stuck on the forms of treatment in Germany because they are much cheaper, but by far not as promising. In my opinion, the argumentation of the health insurance companies is wrong because, as a rule, half of the children suffering from PLE do not survive the first five years after the onset of the disease," says the paediatric cardiologist.
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!".