Fight to save Daniela’s life could benefit other children

TEN-YEAR-OLD Daniela von Leibzig is at first glance a normal little girl who likes to play with her sister.

It is only when talking to those close to her that one hears about her wait for a liver transplant. Daniela has a congenital illness: extra-hepatic biliary atresia, which means that she has no bile ducts outside her liver, as well as abnormal blood vessels in and around the liver.She was diagnosed only three weeks after birth and at nine weeks old Daniela was first operated on, whereby a bypass for the bile fluid was created.Until February last year, she was coping well with her illness and attended school.Then she stated suffering from constant nausea, muscle cramps, listlessness, reduced ability to concentrate and low energy levels.She started missing school and even spent some days in hospital where the symptoms were treated, but the actual cause never confirmed.In March she was taken to South Africa where a duodenal ulcer was found and treatment was immediately started.The ulcer, however, was only a side effect of Daniela’s chronic condition.Her unwellness can be caused by a rise of ammonia levels in her blood because of her liver condition.Ammonia is a waste product of protein processing, which is filtered from the blood in the liver.The liver then disposes of these waste products.Because of Daniela’s abnormal blood vessels around her liver, doctors suspect that the blood flows around the liver rather than through it – this is called “shunting”.Shunting in the area of the liver means that the blood is never properly filtered and waste products accumulate in the blood.Daniela needed a special ammonia testing kit, which was not available in Namibia.With the assistance of Pathcare and donations collected by Daniela’s family in Germany, Michaela Tietz arranged the purchase of this equipment through the Daniela Medical Trust, which was set up to collect money for a liver transplant.This kit has already benefited a number of other patients in Namibia who also need ammonia tests on a regular basis and the trust will be donating a second kit this year.So far the family has raised N$400 000 through the trust and for this year the aim is to raise another N$1 million.The liver transplant can only be done in Germany because of Daniela’s abnormal blood vessels.Once the target sum of 250 000 Euro is reached for Daniela’s transplant, the trust will continue collecting money for other Namibian children with liver and kidney diseases.The family plans to go Germany in April for Daniela to undergo an angiogram to map her abnormal blood vessels, and to have her father, Holger, tested for a possible living donor transplant.During a living donor transplant a part of the donor’s liver is removed and implanted into the recipient and both liver parts regenerate to form two fully functional livers.People wanting to donate money towards the Daniela Medical Trust can do so at Nedbank Main Branch, branch code 461 609, account number 129 000 663 15, Account Name Daniela T von Leibzig.Alternatively, phone Michaela Tietz at 081 127 8544.Daniela has a congenital illness: extra-hepatic biliary atresia, which means that she has no bile ducts outside her liver, as well as abnormal blood vessels in and around the liver.She was diagnosed only three weeks after birth and at nine weeks old Daniela was first operated on, whereby a bypass for the bile fluid was created.Until February last year, she was coping well with her illness and attended school.Then she stated suffering from constant nausea, muscle cramps, listlessness, reduced ability to concentrate and low energy levels.She started missing school and even spent some days in hospital where the symptoms were treated, but the actual cause never confirmed.In March she was taken to South Africa where a duodenal ulcer was found and treatment was immediately started.The ulcer, however, was only a side effect of Daniela’s chronic condition.Her unwellness can be caused by a rise of ammonia levels in her blood because of her liver condition.Ammonia is a waste product of protein processing, which is filtered from the blood in the liver.The liver then disposes of these waste products.Because of Daniela’s abnormal blood vessels around her liver, doctors suspect that the blood flows around the liver rather than through it – this is called “shunting”.Shunting in the area of the liver means that the blood is never properly filtered and waste products accumulate in the blood. Daniela needed a special ammonia testing kit, which was not available in Namibia.With the assistance of Pathcare and donations collected by Daniela’s family in Germany, Michaela Tietz arranged the purchase of this equipment through the Daniela Medical Trust, which was set up to collect money for a liver transplant.This kit has already benefited a number of other patients in Namibia who also need ammonia tests on a regular basis and the trust will be donating a second kit this year.So far the family has raised N$400 000 through the trust and for this year the aim is to raise another N$1 million.The liver transplant can only be done in Germany because of Daniela’s abnormal blood vessels.Once the target sum of 250 000 Euro is reached for Daniela’s transplant, the trust will continue collecting money for other Namibian children with liver and kidney diseases.The family plans to go Germany in April for Daniela to undergo an angiogram to map her abnormal blood vessels, and to have her father, Holger, tested for a possible living donor transplant.During a living donor transplant a part of the donor’s liver is removed and implanted into the recipient and both liver parts regenerate to form two fully functional livers.People wanting to donate money towards the Daniela Medical Trust can do so at Nedbank Main Branch, branch code 461 609, account number 129 000 663 15, Account Name Daniela T von Leibzig.Alternatively, phone Michaela Tietz at 081 127 8544.