Mario Ricardo Maldonado was born in Tegucigalpa, Honduras on November 29, 2003. Two months after his birth, he was diagnosed with Canavan Leukodystrophy due to the severe brain damage reflected in his MRI. At that time Mario had many difficulties, one of them being struggling with eating due to a very severe esophageal reflux, lethargy, irritability, insomnia and seizures. His seizures were impossible to control and they, unfortunately, caused blindness and low hearing. Mario’s doctors had a prognosis of life of just a few months; we, his parents, felt hopeless. Thankfully, when Mario was four months old we met an American Pediatric Neurologist who was in our country as a missionary. He was interested in our child's case and took samples of blood and skin to a South Carolina Genetics Center to find a diagnosis for the disease.
The result, Maple syrup urine disease (MSUD), this diagnosis surprised all the doctors who attended Mario because he was the first child ever to be diagnosed with this disease in Honduras.
From there on our struggles began. Keeping MSUD under control requires careful monitoring of food intake. We learned that one of the ways to monitor his diet was through the intake of a special milk supplement. This supplent is very expensive and hard to get in our country. Still today, my child depends on this milk for his survival. This special supplement keeps him metabolically stable and free of infections, and not only that, it also helps by reversing the brain damage to which our son was subjected during the time he had not had an accurate diagnosis and the time it took to detoxify him from the amino acids that affected his brain ...
Against all diagnosis and severe assertions today Mario is 14 years old, during this time he has had multiple hospitalizations (more than 25) due to infections, which affect his metabolism and have brought him to the edge of a fatal outcome. Apart from the MSUD, Mario has infantile cerebral palsy and hip dislocation; He also has severe esophageal reflux, which was operated on in 2013.
His diagnosis has been very difficult for us as we live in a country where medical resources are very scarce and where there is very little information about the management of this disease.
It is very hard for us to buy his special milk, and pay for his food supplements and medicines at the same time. Together with the medical consultations and therapies the costs are too high for us to afford. We have tried to get a medical insurance but have been rejected time after time as insurers state that my son suffers from a congenital disease and no policy covers it.
Today, we are asking for your financial support. We need to raise the funds to start Marito' stem cell therapy for Cerebral Palsy.
Please help us! Thank you very much for your generosity , God bless you!
- Judith Rodriguez
- Jeffrey Castro
- Enma Pinto
- Karen Rodas
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