We are staying in a temporarily art residency in Santuario and want to help our neighbours' kid Brian Smith to achieve his full hearing capacity.
We are Natalia Escobar, Simon(e) Jaikiriuma Paetau and Christian Küllmei. Natalia and Simon(e) are creating an audio-visual art piece with an indigenous community consisting of approximately 40 Transwomen. Christian is accompanying them and using the inspiration of the place to translate into paintings - which is detached from the project mentioned above. We are lucky to stay in an old beautiful Coffee-Finca close to Santuario. The Finca contains different buildings. In one of them lives a young family. They are employed at the Finca to look after it and take care of the plants and animals. They are Marcela Florez and Diego Cubillos Florez and their child Brian Smith Cubillos Florez (21 month in 02/2020).
Marcela and Diego are young parents (22 and 23 years), they are very responsible in their jobs and with their children. Unfortunately Brian Smith was born with a malformation of the ears and ear canals. This medical condition is referred to as microtia. It causes him a hearing capacity of only 20%. The doctors say a hearing aid must have already been adjusted 4 months ago, an implantation is necessary around the age of six and they suggest a reconstructive operation - which is more a cosmetical intervention and doesn't seem to be necessary to improve the hearing capacity. As he is already in the age of starting to learn how to speak, it makes sense to provide medical service as soon as possible. To learn a verbal language it's necessary to hear. Marcela and Diego's salary doesn't allow them any extraordinary costs which makes the interventions basically impossible. We are trying to support them through our work (playing music and painting with Brian Smith) and want to empower them to undertake the operations soon, so that Brian Smith can experience the full capacity of all his senses.
Who is Brian Smith Cubillos Florez?
Brian Smith was born in 2019 after only 8 months of pregnancy. His mother Marcela had to leave the hospital the day after the cesarean. Brian Smith had to stay 3 more month. His parents were told that their child would not only be deaf but even blind. After 3 months Diego realized that this was not the case - Brian followed his dad with his eyes one day when Diego came to the hospital to visit his child. The luck the parents felt in that moment is unimaginable.
At the time of Brian’s birth Diego was employed on a farm in the zona cafetera in Colombia. When Diego told his employer that he needs to take care of his wife, who just left the hospital the first day after the operation, he was fired. He even offered that his brother could replace him on the farm - the employer rejected. For being unemployed the health insurance canceled the support of the young family. Diego had to sell his motorbike to sustain the families needs.
By now Brian should already have a hearing aid. This was supposed to happen already 4 months ago. For their financial situation Marcela and Diego weren’t able to organize that. Because of this didn't happen, they were pulled into a process of an official institution which wants to take Brian away from his parents - instead of helping them with the medical costs. Diego and Marcella are very well informed about the medical condition and they are considering to only undertake the most necessary steps. The most important treatments include a hearing aid and an implantation of such at a later moment. His auricles are not fully developed, which at the moment only appears as a cosmetic issue. As this might not be necessary for improving the hearing capacity, they are thinking about not undertaking this reconstruction of the auricles. Diego and Marcela are taking care of their children (their elder son is called Joel and is 6 years old). They are dancing with them, painting with them to support different ways of expression. They are so proud of their family life - with a good reason.
Brian Smith is now living in Colombia on a farm close to a small town called Santuario/Risaralda. This kid is growing up in the most beautiful environment you can imagine. Five horses are running freely, there are chicken, a little fish pond and very fertile fruit trees (Mandarines, Oranges, Mangos, Limes, Platanos, Bananas…). Brain Smith is taking full advantage of the place and is obviously loving his life. He is running around the farm like a whirlwind, not being afraid of the big horses, dogs or anything or anyone else. From the first moment we saw him, he picked mandarines - his favorite fruits - from the trees (actually he made us pick the mandarines for him) to share with us. He loves music - the whole Finca is sonicated by music from Maluma and other Colombian Musicians. It needs to be played very loud for him to recognize - the party starts at 9 am. Until now he doesn't realize his limited hearing capacity - but he will realize in the future - talking about school, future social interaction. Without the implantation he won't be able to properly hear and therefore not be able to learn how to speak.
What does Brian Smith need the money for?
The operation costs around 38.000.000 COP/ 8.800 EUR/ 10.600 USD. The health insurance will only cover half of the costs for the treatment. The operating hospital is 10 hours away by bus - in Colombias capital Bogotá. The funding is not only supposed to be used for the operation but also for the additional costs that the parents are not able to pay. This includes transport to and accommodation in Bogotá. Our goal is to raise around 22.000.000 COP/ 5.000 Euro/ 6.000 USD.
By now (02/02/2021) we already helped them to organize a bank account on Diego’s name, as it is not very common to have one in Colombia, if you don't have much money. The bank system is very classist which makes their way through the institutions even harder. We are trying to find a specialist closer to the village to reduce the traveling time and this way improve the medical care. By finding an ear-nose-throat medical centre and with the money we already gave them, they are probably able to stop the process of Brian being taken away from them. Also we contacted health insurances.
We are raising the money outside Colombia and will transfer it to Marcela and Diego.