Odin was born on the 30th of May 2018, making him just over 10 months old.
Odin was admitted to hospital for the first time when he was only 5 weeks old, due to not being able to keep in any milk. He has since had 5 surgeries, been under the care of three hospitals, seen by numerous paediatricians, dieticians, geneticists, physiotherapists with no official diagnosis.
Odin’s little body cannot digest fat or protein. He is in need of very expensive genetic testing to be able to be officially diagnosed, and this is very important, as there can be no plans made for his future, whilst there is no certainty about a diagnosis. Currently, he displays symptoms of both Chylomicron Retention Disease as well as Abetalipoproteinemia, but more predominantly, Chylomicron Retention Disease.
Some of Odin’s symptoms include slow growth and weight gain, frequent (chronic) diarrhoea. They also have reduced blood cholesterol levels (hypocholesterolemia). Some individuals with chylomicron retention disease develop an abnormal build-up of fats in the liver called hepatic stenosis and can have an enlarged liver.
Chylomicron retention disease is a rare condition with approximately 50 cases described worldwide. This condition is inherited in an autosomal recessive pattern, which means both copies of the gene in each cell have mutations. The parents of an individual with an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.
Odin can only ingest and keep down one specific, and massively expensive nutritional formula, called Nestlé Alfaré. At between R420.00 and R450.00 per tin, which lasts three days at the moment but will get to be less feeds per tin as he grows, he needs a minimum of 10 tins per month, so the cost is between R4200.00 and R4500.00.
The Alfaré is mixed and then pumped into his stomach directly, and this is done with a Kangaroo Pump, and Mic-key Continuous Feed Lines.
Apart from his Alfaré, he also has to have purified water, Mic-key Continuous Feed Lines R1240 bulk packs of nappies a month, 18 packs of wet-wipes, other nutritional supplements and care products.
The financial costs are extremely challenging for Odin’s parents and any assistance to alleviate the financial obligations will be highly appreciated!
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