This family from Isère is preparing for a fantastic adventure. Three-year-old Thomas and his parents Yves and Stéphanie Belmont will travel to the USA in May 2023 so that the little boy can hear with both ears. He was born with aplasia of the right ear, a rare malformation which makes him deaf on this side, and which remains little known in France. But in the USA, in San Francisco, an operation is possible to reconstruct a right ear. It costs $100,000.
To help them cover this sum, Thomas’ parents set up the association “Life in Stereo”
a few months ago. In addition to the goal of raising funds, they would like to try to mobilize French medicine more about this pathology and support other families who may be affected. Aplasia affects one in 15,000 births in France.
Six weeks in the US and $100,000
Stéphanie and Yves Belmont left the maternity ward without any real response from the medical profession. “In the delivery room we hear the word malformation, we panic and don’t have information from the doctors, it’s even more anxiety-inducing” says Stephanie. “We got home, they all told us not to look on the internet, we couldn’t last much longer” remembers Yves.
Thanks to their research on the Internet, they find another child with aplasia. This child gives them hope as he was successfully operated on in the US. “It is the creation of the auditory canal, the eardrum, so that he can hear again from this ear. One surgeon specializes in plastics of the pavilion, another for the auditory canal.” Thomas’ parents explain. The operation takes place in San-Francisco thereafter the postoperative follow-up takes place between this city on the west coast of the United States and Los Angeles.
Advocates that this operation exists in France
We must stay six weeks there. The costs are enormous but Stéphanie and Yves Belmont are determined that their son will live with normal hearing. “We had to find a solution, so at the beginning we said to ourselves: we will sell the house” says Thomas’ mother. The idea of an online kitty is also there, but as they have “the deep desire to do something more that will overtake Thomas”, so they set about creating “La Vie en Stereo”. This association must make it possible for them “sharing our daily lives, what we have introduced in terms of speech therapy, wearing your hearing aid… all these little techniques that we would have liked to have immediately.”
In addition to this advice, Thomas’ parents want the French medical profession to take an interest in aplasia. “I understand that we cannot master all the techniques, but we can learn from other countries” says Stephanie Belmont, “It is still a technique that has been practiced for more than 15 years and there are already many French people who have gone there. It is disappointing that we cannot look into this case, use the medical records of all these French people.” So she appeals to the doctors: “Anyone who wants to look into it, including interns, if they want to do a thesis, we will open Thomas’s whole file. If they want to take an interest in the subject, we will be very cooperative.”
The problem, according to her, is that no doctor or researcher currently wants to take an interest in it. If you want to support Thomas’ family with the association “La Vie en Stereo”, all information is available by clicking this link.