A girl from Alicante with a disease with only six cases in the world seeks funding to be treated in the US

The neighboring municipalities of Sant Joan d'Alacant and Mutxamel have joined forces to help Africa, a three-year-old girl with a rare disease that only six people in the world suffer from and whose only hope is the clinical trial offered by a United States, specifically Maryland.

A girl from Alicante with a disease with only six cases in the world seeks funding to be treated in the US

The neighboring municipalities of Sant Joan d'Alacant and Mutxamel have joined forces to help Africa, a three-year-old girl with a rare disease that only six people in the world suffer from and whose only hope is the clinical trial offered by a United States, specifically Maryland.

Since birth, Africa has suffered from extreme insulin resistance, also called Donohue Syndrome, and her mother, Sara, explains the reason for her efforts to travel to the United States: "The life expectancy of these children is very short and the only treatment is a clinical trial at a Maryland hospital. Although it is a trial, it is yielding results because there is a 24-year-old boy there.

Africa cannot start treatment until it turns five and we are clear that we are going to go there.

Sara recounts how Africa was diagnosed with this rare disease: "It all started when she saw that the girl did not gain weight during pregnancy, so they advanced the delivery to week 37. Since she was born very small (less than two kilos), she was hospitalized Exorbitant levels have already appeared in the ICU and in the sugar tests,” recalls the mother, who continues: “We obtained the definitive diagnosis in Madrid with a genetic test in La Paz. Africa also has facial features that are very characteristic of this disease, similar to those of an elf."

The parents from Africa have decided to travel to Maryland when the girl turns five and to raise money they have formed the Donohue Syndrome/Extreme Diabetes Association: "We created the association to give peace of mind to people who wanted to help us, in this way we explain to the Treasury of everything that goes in and everything that goes out... The treatment in the United States really has no cost because it is a clinical trial, but we are raising funds to be able to pay for all the trips that will have to be made ».

The councils of Sant Joan d'Alacant and Mutxamel have organized this Saturday afternoon a march on foot and different activities to contribute to the struggle of this family from Alicante who are counting down the days to pack their bags and cross the pond in search of a better life for little Africa.

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