Please, help Luis! | Support for his PLE treatment in the USA
A project from Fontanherzen e. V. in Wilmington, USA
Please, help Luis! Luis is a 4 years young boy. He has PLE and is in desperate need of life-sustaining treatment in the US! Luis and other children with half a heart and a diagnosis of PLE are running out of time.
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About this project
Steffi Sänger from Fontanherzen e. V. is responsible for this project
Please, help Luis!
Luis is a 4 years young boy. He has PLE (Protein Losing Enteropathy; agonizing protein loss through the intestines) and is in desperate need of life-sustaining treatment in the US! Luis and other children with half a heart and a diagnosis of PLE are running out of time; many do not survive the first five years after diagnosis.
Donations will be used for:
Luis is a 4 years young boy. He has PLE (Protein Losing Enteropathy; agonizing protein loss through the intestines) and is in desperate need of life-sustaining treatment in the US! Luis and other children with half a heart and a diagnosis of PLE are running out of time; many do not survive the first five years after diagnosis.
Donations will be used for:
- Medical flight (transport by ambulance flight necessary) and treatment for Luis in the USA so that he is out of danger of death (in total up to 350.000€)
- Establishment of this interdisciplinary treatment in Germany
- Establishment of vital interdisciplinary Fontan competence centers in Germany
Luis wants to live - his sister and parents are very afraid for him.
Sunshine Luis was born with the most severe congenital heart defect, hypoplastic left heart syndrome. This heart defect is not curable. Luis had his last of three major heart surgeries in June 2021. Then came the diagnosis of "life-threatening protein leakage syndrome through the intestine - PLE." Causes and correlates of the rare complication remain unexplained worldwide. For the past year, Luis and his family have been fighting at the physical and psychological limit without any real respite. Especially against massive water retention, which causes a strongly expanding abdominal girth. The result: shortness of breath, pain, sleepless nights & repeated hospital stays.
Despite his extensive limitations, Luis seems strong and wants to live. At 4.5 years old, he is just learning to write and loves to memorize everything about wild animals.
Luis' sister Mora is proud of her brother, even though she has to endure great hardships. This is because everyday family life is adapted to her brother's needs: Medication administration, inhalations, time-consuming preparation of his MCT diet, various therapies and doctor's visits. But his health is deteriorating visibly.
For several years, physicians in the U.S. have dedicated themselves to the interdisciplinary treatment of this agonizing, life-threatening complication associated with lymphatic malformations, gaining the most experience in the process. At Nemours Children's Hospital in Wilmington, a minimally invasive treatment is performed endoscopically in the intestine. It helps prevent vital protein from being excreted through the intestines.
Even though the procedure is only a treatment for symptoms, affected families hope to buy time for their heart children. PS: Luis' health insurance company has rejected the treatment abroad. The family is appealing, but time is running against Luis.
Please, help and spread the word!
Sunshine Luis was born with the most severe congenital heart defect, hypoplastic left heart syndrome. This heart defect is not curable. Luis had his last of three major heart surgeries in June 2021. Then came the diagnosis of "life-threatening protein leakage syndrome through the intestine - PLE." Causes and correlates of the rare complication remain unexplained worldwide. For the past year, Luis and his family have been fighting at the physical and psychological limit without any real respite. Especially against massive water retention, which causes a strongly expanding abdominal girth. The result: shortness of breath, pain, sleepless nights & repeated hospital stays.
Despite his extensive limitations, Luis seems strong and wants to live. At 4.5 years old, he is just learning to write and loves to memorize everything about wild animals.
Luis' sister Mora is proud of her brother, even though she has to endure great hardships. This is because everyday family life is adapted to her brother's needs: Medication administration, inhalations, time-consuming preparation of his MCT diet, various therapies and doctor's visits. But his health is deteriorating visibly.
For several years, physicians in the U.S. have dedicated themselves to the interdisciplinary treatment of this agonizing, life-threatening complication associated with lymphatic malformations, gaining the most experience in the process. At Nemours Children's Hospital in Wilmington, a minimally invasive treatment is performed endoscopically in the intestine. It helps prevent vital protein from being excreted through the intestines.
Even though the procedure is only a treatment for symptoms, affected families hope to buy time for their heart children. PS: Luis' health insurance company has rejected the treatment abroad. The family is appealing, but time is running against Luis.
Please, help and spread the word!
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