Louis'Hearing - French Association of Atresia Microtia

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Louis’hearing project

Hello, My name is Louis. I am 8 years old. I was born with a somewhat special ear, I got used to it, but I can't hear well, I am deaf in one ear. I have a dream, I would like to hear with my 2 ears like all my friends ... To hear, I use a hearing aid mounted to the stems of my eyeglasses. I don't like being photographed on the Internet, or seeing my "little ear" or my "camera glasses", but I want to hear like everyone else. My parents told me that the laws in France had changed and that "device glasses" were no longer made in France. So, I'm afraid to break my glasses, I only use them at home or at school, and on the playground I take off my "device glasses", I have to always change my glasses, because if the "device glasses" are broken, I’ll have to wear a blindfold on the head or a screw in my skull with a definitive device. And that I don't want. My parents told me that an ear reconstruction operation was possible in the United States. So I would like to go there, not for fun, not for travel, but because it is the only solution for me to have surgery and to hear without a device ... I would just like to hear like all my friends, like everyone else, with my two ears. Louis

Our Anglo Saxon fundraising campaign : gf.me/u/x8dj7v

Our Anglo Saxon page : https://www.facebook.com/LouisHearing-French-Association-of-Atresia-Microtia-102417614841838/

Louis cannot hear with both ears because he was born with a rare birth defect affecting the left ear : aplasia. Aplasia affects people who have microtia and atresia. Microtia: deformation or absence of pavilion Atresia: Absence of ear canal. Atresia can happen on its own, however microtia is always accompanied by atresia. In France,1 child in 15,000 is affected by this sensory handicap which makes it an excessively rare defect (we consider that an illness / malformation is rare when it affects less than 1 person in 2000). Louis is this child out of 15,000. This malformation, and therefore this sensory handicap, is repairable. The complete reconstruction of the ear shown on the diagram is currently possible only in the United States, in California, in a single operation to reconstruct the pavilion (medpor implant) and the ear canal (canaloplasty). In France, only the pavilion can be operated, and generally in 5 operations and only from the age of 10. There is currently no possibility of repairing the ear canal in France. These ear reconstruction operations are not supported because they are only possible in the USA. Almost none of the families concerned are informed by French doctors of this possible operation, of this repair, families are sensitized by word of mouth. We identified 24 families in Francewho used or who started the journey to the USA, for this operation concerning the pavilion, and / or the auditory canal. The cost of the operation in the United States is very high (€ 40,000 just for the operation), and travel and accommodation costs must be added as Louis won’t be able to take a return flight home immediately after his operation. Each child must stay in the United Statesfor a minimum of 5 weeks, convalescing. (Post-operative convalescence, healing control and air pressure problem on the inner ear). Obviously, for all the families confronted with this malformation, the costs of the operation represent a huge financial strain, but with small gestures, together, by spreading the word, we hope to make Louis’ operation a reality. We do not choose to be born different, but we can choose to act to repair what we have not received naturally, especially when possible, and even if we have to go to the end of the world! To help our son and all the children affected by aplasia, we founded an association: Louis' hearing. Our associative goal is to publicize this birth defect: Aplasia and therefore directly atresia and microtia , to educate health professionals in France, support their training, to establish a link between these families affected by this malformation, but also to provide our advice, and mobilize finance (pots, donations, patronage, various actions, sponsorship ...) to achieve these objectives. In the short term, this kitty will allow Louis to go to the USAto have surgery and hear with both ears like all children. In the medium term, our goal is to support other families seeking treatment and operations in the USA. Louis, source of our fight, gave his first name to the association which aims to be a bearer of hope for many affected children with this sensory handicap. The goals and missions of the association are: - publicize microtia, atresia, aplasia - to collect funds in order to finance the surgical operations in the United States (doctor Reinisch and doctor Roberson) for children affected by aplasia. - to create a chain of solidarity around children suffering from atresia, microtia, aplasia in order to face the material and financial consequences necessary to compensate and repair this sensory handicap and to raise awareness around microtia (absence of conduit (s) , absence or deformation of the ear (s)). - promote "comfort" materials not supported by organizations (social security, private insurance, MDPH, etc.) and at the expense of the family (and in particular hearing aids implanted on glasses and no longer covered by our insurance) -to offer children the same opportunities (brain development, language, self-confidence, listening ...) and the same rights (successful schooling, choice of jobs, ...) that any child is entitled to. Hearing does not only allow you to hear, it also contributes to brain development, and children without hearing or with total or unilateral deafness do not have the same development potential. Aware that the success of the project cannot be based solely on donations from individuals, we want to organize other research for funding elsewhere (various activities, concerts, shows, piggy bank at merchants ...) to help Louis and also other children in his situation. You can help us by making a donation, but also by putting us in contact with event organizers, we are open to all proposals allowing us to raise funds for this operation. If Louis is the first on the list for this type of operation, the will of the association is to raise money for all children by collaborating with corporations, foundations, health professionals, and the media. We also want to bring together and federate all the small associations to mobilize political decision-makers. ----------- No need to create an account or register, it's fast by Credit Card or PayPal. If you cannot participate financially, share this pot around you as much as possible.

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