Thalia’s Journey To Walk
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English - Italian
UPDATE on Thalia’s surgeries:
First of all, THANKS TO YOU ALL, each one of you, for helping us making it possible for Thalia to have a future! We feel so blessed that many amazing people reached us and wanted to help Thalia, we are so grateful!
During the last months we have had several complications with Dubai’s plan.
We have decided to change destination and bring Thalia to the USA, in Florida at the Paley Institute.
There is an excellent surgeon in Florida who successfully performs many reconstructions of limbs affected by Tibial Hemimelia; the treatment is pretty much the same. We are going to stay 9+ months in the USA and Thalia will have 3 surgeries while she wears an external fixator for the whole time of the treatment.
We have finally booked the first surgery to be on June 12th! And we are traveling to Florida on May 30th.
We have reached the target for the medical expenses thanks to all of you and some organizations who helped us.
We will still have many expenses during our long stay in America and if you would like to continue helping us we will really appreciate any kind of help! We are scared to start this long treatment but we are also so very thrilled to finally see her walking soon!
Thank you for reading,
Valeria, Thalia’s mom
—————————————
Meet Thalia! This is my 2 year old daughter who was born on February 17th 2017 with Tibial Hemimelia on her left leg, which means she is completely missing her tibia, the strong bone, and also has a bifurcation on the femur. We found out only at birth that Thalia was affected by this condition, which occurs one in a million children, and she also had esophageal atresia, a condition which makes the baby unable to swallow.
She had a first surgery to fix her food pipe on her second day of life, and another surgery at 5 months old. She has been 100% tube fed through a g-tube for more than a year. Since July 2018 she has finally started eating orally.
To treat Tibial Hemimelia there is a treatment which only 2 surgeons in the world are able to perform successfully. Without this treatment she cannot walk or stand up. In Italy, the country where I am from, this treatment is not available, due to the rarity of this birth defect which is still unknown. Amputation is the only solution we have been proposed.
My husband and I knew from her birth that if there was any surgeon in the world who would be able to treat tibial hemimelia, we would do anything in our power to save her leg and possibly avoid amputation.
The treatment consists in 3 surgeries during a period of 9 months in which Thalia would be wearing an external fixator, and she will need lots of physiotherapy everyday.
We are doing whatever it takes to take her to the USA to start this treatment and every donation would be deeply and greatly appreciated.
Help us making our dream to see her walking.
For more information contact the family: [email redacted]
***********************
Thalia è nata il 17 febbraio 2017 a Firenze, affetta da una malformazione alla gamba sinistra insieme ad una malformazione all’esofago. Il tutto non era stato diagnosticato in gravidanza e, nonostante tutti gli accertamenti fatti, lo abbiamo scoperto solo alla nascita.
Subito si sono accorti che mia figlia non riusciva a deglutire e le hanno diagnosticato atresia esofagea, per la quale è stata subito operata al secondo giorno di vita. Rimasta in TIN per 45 giorni, è stata poi operata una seconda volta a 5 mesi. Thalia è stata nutrita tramite peg (un tubicino allo stomaco) per più di un anno, dal luglio 2018 finalmente riesce a nutrirsi per bocca.
Thalia ha un’emimelia tibiale alla gamba sinistra, il che vuol dire che le manca completamente la tibia e per questo la sua gamba è più corta e piegata verso l’interno. In più lei ha una biforcazione al femore.
Affinché Thalia possa camminare, l’unica possibilità di poter salvare la gamba è un trattamento che solo 2 chirurghi ortopedici al mondo riescono ad eseguire con successo. Uno di questi è il dott. Paley in Florida negli Stati Uniti ed è là che vorremmo portare Thalia.
Data la rarità di questa malformazione che si manifesta su un bambino su un milione, è purtroppo ancora poco conosciuta e nessuno in Italia esegue questo trattamento. L’unica soluzione che ci è stata proposta è stata l’amputazione.
Il trattamento del dott. Paley consiste di 3 operazioni da eseguire in 9 mesi durante i quali Thalia dovrà portare un fissatore esterno, e dovrà fare tanta fisioterapia per tutta la durata del trattamento. Stiamo facendo il possibile per portarla in Florida, ogni donazione può fare la differenza per Thalia.
Aiutateci a realizzare il sogno di vederla camminare.
Per maggiori informazioni e per contattare la famiglia: [email redacted]
Potete seguire il viaggio di Thalia sulla nostra pagina Facebook:
https://m.facebook.com/insiemeperThalia/
English - Italian
UPDATE on Thalia’s surgeries:
First of all, THANKS TO YOU ALL, each one of you, for helping us making it possible for Thalia to have a future! We feel so blessed that many amazing people reached us and wanted to help Thalia, we are so grateful!
During the last months we have had several complications with Dubai’s plan.
We have decided to change destination and bring Thalia to the USA, in Florida at the Paley Institute.
There is an excellent surgeon in Florida who successfully performs many reconstructions of limbs affected by Tibial Hemimelia; the treatment is pretty much the same. We are going to stay 9+ months in the USA and Thalia will have 3 surgeries while she wears an external fixator for the whole time of the treatment.
We have finally booked the first surgery to be on June 12th! And we are traveling to Florida on May 30th.
We have reached the target for the medical expenses thanks to all of you and some organizations who helped us.
We will still have many expenses during our long stay in America and if you would like to continue helping us we will really appreciate any kind of help! We are scared to start this long treatment but we are also so very thrilled to finally see her walking soon!
Thank you for reading,
Valeria, Thalia’s mom
—————————————
Meet Thalia! This is my 2 year old daughter who was born on February 17th 2017 with Tibial Hemimelia on her left leg, which means she is completely missing her tibia, the strong bone, and also has a bifurcation on the femur. We found out only at birth that Thalia was affected by this condition, which occurs one in a million children, and she also had esophageal atresia, a condition which makes the baby unable to swallow.
She had a first surgery to fix her food pipe on her second day of life, and another surgery at 5 months old. She has been 100% tube fed through a g-tube for more than a year. Since July 2018 she has finally started eating orally.
To treat Tibial Hemimelia there is a treatment which only 2 surgeons in the world are able to perform successfully. Without this treatment she cannot walk or stand up. In Italy, the country where I am from, this treatment is not available, due to the rarity of this birth defect which is still unknown. Amputation is the only solution we have been proposed.
My husband and I knew from her birth that if there was any surgeon in the world who would be able to treat tibial hemimelia, we would do anything in our power to save her leg and possibly avoid amputation.
The treatment consists in 3 surgeries during a period of 9 months in which Thalia would be wearing an external fixator, and she will need lots of physiotherapy everyday.
We are doing whatever it takes to take her to the USA to start this treatment and every donation would be deeply and greatly appreciated.
Help us making our dream to see her walking.
For more information contact the family: [email redacted]
***********************
Thalia è nata il 17 febbraio 2017 a Firenze, affetta da una malformazione alla gamba sinistra insieme ad una malformazione all’esofago. Il tutto non era stato diagnosticato in gravidanza e, nonostante tutti gli accertamenti fatti, lo abbiamo scoperto solo alla nascita.
Subito si sono accorti che mia figlia non riusciva a deglutire e le hanno diagnosticato atresia esofagea, per la quale è stata subito operata al secondo giorno di vita. Rimasta in TIN per 45 giorni, è stata poi operata una seconda volta a 5 mesi. Thalia è stata nutrita tramite peg (un tubicino allo stomaco) per più di un anno, dal luglio 2018 finalmente riesce a nutrirsi per bocca.
Thalia ha un’emimelia tibiale alla gamba sinistra, il che vuol dire che le manca completamente la tibia e per questo la sua gamba è più corta e piegata verso l’interno. In più lei ha una biforcazione al femore.
Affinché Thalia possa camminare, l’unica possibilità di poter salvare la gamba è un trattamento che solo 2 chirurghi ortopedici al mondo riescono ad eseguire con successo. Uno di questi è il dott. Paley in Florida negli Stati Uniti ed è là che vorremmo portare Thalia.
Data la rarità di questa malformazione che si manifesta su un bambino su un milione, è purtroppo ancora poco conosciuta e nessuno in Italia esegue questo trattamento. L’unica soluzione che ci è stata proposta è stata l’amputazione.
Il trattamento del dott. Paley consiste di 3 operazioni da eseguire in 9 mesi durante i quali Thalia dovrà portare un fissatore esterno, e dovrà fare tanta fisioterapia per tutta la durata del trattamento. Stiamo facendo il possibile per portarla in Florida, ogni donazione può fare la differenza per Thalia.
Aiutateci a realizzare il sogno di vederla camminare.
Per maggiori informazioni e per contattare la famiglia: [email redacted]
Potete seguire il viaggio di Thalia sulla nostra pagina Facebook:
https://m.facebook.com/insiemeperThalia/
Organizer
Valeria Pellegrini
Organizer
Terranuova Bracciolini