Operation Anastacia
Donation protected
THE ANASTACIA PROJECT
Anastacia Tilotta was born in 2009 with both ears missing and also the ear canal completely closed. This condition called”atresia microtia”causes hearing loss on both sides.
From the age of 3 months old, Anastacia has been equipped with an external hearing device and has been following a normal school program
Her parents learned 2 years ago that a revolutionary surgical procedure of rebuilding a new outer ear (medpor method) and creating an inner canal is performed by 2 very high profile pediatric surgeons at the Palo Alto Ear Institute close to San Francisco Ca.
The medical evaluation of Anastacia including a CT scan indicates that she is an excellent candidate to undergo this surgical procedure
This complex and specialized all day long operation ( 9 hours) will be performed at Palo Alto Ear Institute on July 15th 2021 with 4 post treatment appointments in Los Angeles during the 4 following weeks .
ANASTACIA
Anastacia was born in Brignoles on Jan 2nd 2009; She is affected by atresia microtia, a disease which affects one child out of 50,000.
In 2009, an urgent appointment with a specialsed pediatric doctor in Marseille allowed the family to be informed about the situation, to explain the problem and more important to take ASAP the necessary actions: audiogram hearing test at 6 weeks old , external hearing equipment installation when she was 10weeks old , first examinations and operations, speech therapy.
Life during the first 8 years of Anastacia was organized around the appointments for diagnostic examinations, planning and organizing surgical interventions, audiograms. But also every week some speech and psycho logic therapy in Toulon in a care department dedicated to the assistance of children and families affected by such kind of situation.
These are the operations that Anastacia underwent between 2012 and 2015 in France, because in addition to her hearing problem, she has some malformations in her mouth, including an asymmetry of the jaw and face:
- closure of a submucosal veolar division (double Z opposite technique) - 2012,
- fitting of a BAHA Attract straight (Cochlear) bone conduction and bone anchored hearing aid with a subcutaneous magnetic part - 2015,
- left mandibular distractor placement - 2015.
This latest operation, very delicate and above all very painful, was only a first step to prepare the ground for a mandibular levelling surgery and ginioplasty which will take place around the age of 15, followed by a long orthodontic treatment afterwards in order to align both jaws but also to redesign the chin with the hope of improving the joint.
Today Anastacia suffers from some speech problems for some sounds produced with the rear part of her tongue [t], [s], [ʃ], [z], [d], [n], [3], [l] , She has been benefiting from some speech therapy since she was 36 months old, which requires a lot of time and organizing for the parents. The purpose of this therapy is to correct her dysfunctional swallowing, the low and in front lingual position and to improve her oral ventilation. The parents also decided to give her some speech therapy in Russian language via internet, in order to get some training for the specific sounds of this language (the r pronunciation using the front of the tongue) but also to improve the use of her mother language
Anastacia made a lot of progress in speech, but she needs to make a lot of efforts with her tongue and lips to produce some particular sounds which is not natural and consequently tiring for her. She must make much more effort than other children lo listen, speak and to be understood by people.
Since the beginning, her parents have decided to educate Anastacia as a normal child, they do not consider her as an handicapped person. They are convinced that this choice will allow her to become stronger and help her thrive. They dedicate more time to her for medical processes and for school, but she has always followed the same educational program as her elder sister Tatiana and the same after-school activities and sports.
Since she was a child, Anastacia has surprised people with her physical ability, she started walking when she was 9 months old, she was able to ride a scooter when she was 2, practice skiing and roller skating when she was 3 and she could ride a bicycle when she was only 4 years old. Now she enjoys dancing and progresses quickly when she practices dancing, skiing, snowboarding or skateboarding and other sports that her parents present her like Hand Ball (N°7 on the picture) or climbing.
Despite the absence of external and middle ear, Anastacia has a good musical sense: she loves listening to music, she plays the guitar and drum set and she sings. She took some theater lessons and played her first roles 2 years ago.
Anastacia has some artistic skills, doing drawing and painting, hand craft and knitting, she wishes to start pottery.
This year Anastacia is in 6th grade at the middle school of Gareoult (the small city where the family lives, close to Brignoles) and she does not have any problem with her school program. She is equipped with some hearing aid and a Bluetooth microphone used by the teachers to amplify their voice. She needs to make big efforts to follow the class, particularly now as the wearing of masks by the teachers decreases the power of their voice and eliminates any possibility for her to lip-read.
Anastacia is a strong and combative person, she is not afraid of surgery and is not disheartened by pain. She is a very nice girl, open to others, and faithful and also very active, full of energy, funny, rock-and-roll, emotional.
Her physical difference allowed the family to learn a lot of things, in particular tolerance, it made the family stronger and unified, it allowed her parents to meet new people. The parents are sure that they will enjoy good moments in the future, some changes, all the family is progressing with her.
THE OPERATION OF ANASTACIA:
A new method of ear rebuilding called Medpor Method is performed by 2 extremely experienced professors at the Palo Alto ear institute in California. In one highly complex and specialized all day operation, they will be able to create an inner ear canal and a new outer ear for Anastacia from synthetic biomaterial and wrap it in a thin layer of tissue from her own skin
The medical evaluation of Anastacia and her medical records, including an audiogram hearing test and a CT scan indicate that she is an excellent candidate to undergo this unique and life-changing surgical procedure with 60% chances to obtain normal hearing on this side.
This 9-hour-operation performed by Pr J Roberson will take place in Palo Alto, close to San Francisco Ca on July 15th 2021 , and will be followed by 4 post surgical appointments with Dr Reinisch in Beverly Hills Los Angeles from July 18yh to August 4th
The Tilotta Family finances this operation with their own money for an amount of approx 87,000 $ , they are now negotiating the corresponding personal loan with their bank, as the French social security system does not provide any help to them.
CLICK HERE for more pictures of the Tillota family and their activities.
Anastacia Tilotta was born in 2009 with both ears missing and also the ear canal completely closed. This condition called”atresia microtia”causes hearing loss on both sides.
From the age of 3 months old, Anastacia has been equipped with an external hearing device and has been following a normal school program
Her parents learned 2 years ago that a revolutionary surgical procedure of rebuilding a new outer ear (medpor method) and creating an inner canal is performed by 2 very high profile pediatric surgeons at the Palo Alto Ear Institute close to San Francisco Ca.
The medical evaluation of Anastacia including a CT scan indicates that she is an excellent candidate to undergo this surgical procedure
This complex and specialized all day long operation ( 9 hours) will be performed at Palo Alto Ear Institute on July 15th 2021 with 4 post treatment appointments in Los Angeles during the 4 following weeks .
ANASTACIA
Anastacia was born in Brignoles on Jan 2nd 2009; She is affected by atresia microtia, a disease which affects one child out of 50,000.
In 2009, an urgent appointment with a specialsed pediatric doctor in Marseille allowed the family to be informed about the situation, to explain the problem and more important to take ASAP the necessary actions: audiogram hearing test at 6 weeks old , external hearing equipment installation when she was 10weeks old , first examinations and operations, speech therapy.
Life during the first 8 years of Anastacia was organized around the appointments for diagnostic examinations, planning and organizing surgical interventions, audiograms. But also every week some speech and psycho logic therapy in Toulon in a care department dedicated to the assistance of children and families affected by such kind of situation.
These are the operations that Anastacia underwent between 2012 and 2015 in France, because in addition to her hearing problem, she has some malformations in her mouth, including an asymmetry of the jaw and face:
- closure of a submucosal veolar division (double Z opposite technique) - 2012,
- fitting of a BAHA Attract straight (Cochlear) bone conduction and bone anchored hearing aid with a subcutaneous magnetic part - 2015,
- left mandibular distractor placement - 2015.
This latest operation, very delicate and above all very painful, was only a first step to prepare the ground for a mandibular levelling surgery and ginioplasty which will take place around the age of 15, followed by a long orthodontic treatment afterwards in order to align both jaws but also to redesign the chin with the hope of improving the joint.
Today Anastacia suffers from some speech problems for some sounds produced with the rear part of her tongue [t], [s], [ʃ], [z], [d], [n], [3], [l] , She has been benefiting from some speech therapy since she was 36 months old, which requires a lot of time and organizing for the parents. The purpose of this therapy is to correct her dysfunctional swallowing, the low and in front lingual position and to improve her oral ventilation. The parents also decided to give her some speech therapy in Russian language via internet, in order to get some training for the specific sounds of this language (the r pronunciation using the front of the tongue) but also to improve the use of her mother language
Anastacia made a lot of progress in speech, but she needs to make a lot of efforts with her tongue and lips to produce some particular sounds which is not natural and consequently tiring for her. She must make much more effort than other children lo listen, speak and to be understood by people.
Since the beginning, her parents have decided to educate Anastacia as a normal child, they do not consider her as an handicapped person. They are convinced that this choice will allow her to become stronger and help her thrive. They dedicate more time to her for medical processes and for school, but she has always followed the same educational program as her elder sister Tatiana and the same after-school activities and sports.
Since she was a child, Anastacia has surprised people with her physical ability, she started walking when she was 9 months old, she was able to ride a scooter when she was 2, practice skiing and roller skating when she was 3 and she could ride a bicycle when she was only 4 years old. Now she enjoys dancing and progresses quickly when she practices dancing, skiing, snowboarding or skateboarding and other sports that her parents present her like Hand Ball (N°7 on the picture) or climbing.
Despite the absence of external and middle ear, Anastacia has a good musical sense: she loves listening to music, she plays the guitar and drum set and she sings. She took some theater lessons and played her first roles 2 years ago.
Anastacia has some artistic skills, doing drawing and painting, hand craft and knitting, she wishes to start pottery.
This year Anastacia is in 6th grade at the middle school of Gareoult (the small city where the family lives, close to Brignoles) and she does not have any problem with her school program. She is equipped with some hearing aid and a Bluetooth microphone used by the teachers to amplify their voice. She needs to make big efforts to follow the class, particularly now as the wearing of masks by the teachers decreases the power of their voice and eliminates any possibility for her to lip-read.
Anastacia is a strong and combative person, she is not afraid of surgery and is not disheartened by pain. She is a very nice girl, open to others, and faithful and also very active, full of energy, funny, rock-and-roll, emotional.
Her physical difference allowed the family to learn a lot of things, in particular tolerance, it made the family stronger and unified, it allowed her parents to meet new people. The parents are sure that they will enjoy good moments in the future, some changes, all the family is progressing with her.
THE OPERATION OF ANASTACIA:
A new method of ear rebuilding called Medpor Method is performed by 2 extremely experienced professors at the Palo Alto ear institute in California. In one highly complex and specialized all day operation, they will be able to create an inner ear canal and a new outer ear for Anastacia from synthetic biomaterial and wrap it in a thin layer of tissue from her own skin
The medical evaluation of Anastacia and her medical records, including an audiogram hearing test and a CT scan indicate that she is an excellent candidate to undergo this unique and life-changing surgical procedure with 60% chances to obtain normal hearing on this side.
This 9-hour-operation performed by Pr J Roberson will take place in Palo Alto, close to San Francisco Ca on July 15th 2021 , and will be followed by 4 post surgical appointments with Dr Reinisch in Beverly Hills Los Angeles from July 18yh to August 4th
The Tilotta Family finances this operation with their own money for an amount of approx 87,000 $ , they are now negotiating the corresponding personal loan with their bank, as the French social security system does not provide any help to them.
CLICK HERE for more pictures of the Tillota family and their activities.
Organizer
Charles Black
Organizer
Los Angeles, CA
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