Chiara will walk!
My name is Chiara Brunetti and was born on March 13th, 2021. Full of curiosity, I decided to prematurely surprise my mom and dad on the 35th week of pregnancy and say "hello" personally. My parents were thrilled from the beginning! I'm their first child, you see. I just wanted to meet them as soon as possible. Every day I heard mom and dad whispering. They kept saying how much they love me and how they could hardly wait to see me and hold me.
Mom stroked her belly often and took care of me. Dad said how he would teach me how to play football and ride a bike as soon as I was old enough. But suddenly a cloud was cast over the room. Something was different. Not only for me, because I was missing the warmth of my mom's belly, but also for my parents. The doctors inspected my small body closely and said that I have clubfoot, because that's how my feet looked like. After a couple of days it turned out that there was a bigger problem with me than that...
It's called tibial hemimelia. I don't know what it means for me and I can't imagine how that will prevent me from crawling, walking, riding a bike with mom or playing football with dad. I have never done any of those things, but I would love to try them all in the future. I would like to know how it feels like to walk through a normal and happy life together with mom and dad...♥
Our first and only child Chiara Brunetti was born on March 13th, 2021 in Brunswick, Germany. She came into the world as a premature baby on the 35th week of pregnancy. The pregnancy went without complications and we were filled with anticipation as we waited to finally see our little angel. However it became clear at birth that there was something wrong. Her feet were rotated inward, which was at first diagnosed as ordinary clubfoot. But it became clear a few days later that the problem affecting our little girl was bigger...
It is an extremely rare malformation of the tibia that, statics show, affects 1 in every 1,000,000 newborns. In Chiara's case both lower legs are affected, with the problem being more prominent in the right one.
Because the lower legs didn't develop properly until the ankles, her feet were also malformed. Restlessly, we visited multiple clinics in Germany during her first three months of life. In addition, we traveled to Bologna in Italy to exhaust every possibility we heard of. The outlook didn't look promising.
Chiara requires surgeries on both legs and feet in order to be able to walk on her own one day.
Amputations for over 14 years totalling more than 10 surgeries with an uncertain result. There is no guarantee that in the end she will be able to walk unassisted or without orthoprosthesis.
Because of how uncommon this birth defect is, doctors have less experience treating it as a parent would hope would be the case.
Just as great as the love for our daughter and the pride of our new, small family was the shock and sadness.
It's difficult to put feelings into words when you realize those are the life prospects of your own child. We can't and won't give up looking for options...
After the tibial hemimelia diagnosis we got in contact with a mother from Germany on Facebook who went through a similar problem with her son.
She recommended to us an American doctor specializing in pedriatic orthopedics, Dr. Dror Paley.
Her son was already undergoing treatment and went through one successful surgery. After doing some research on him it was clear to us that he could be Chiara's greatest hope.
He has more experience and has successfully treated more children that anyone else in the world.
You can get a better picture of this from his website, with numerous cases of children that he has helped.
We got in touch with him and sent him Chiara's reports and X-rays. Dr. Paley's reply was a glimmer of hope. A positive response after the many negative conversations.
He classified the seriousness of Chiara's malformity and let us know that he could positively rebuild her lower legs and feet!
„"Chiara will be able to jump, run and do sports like any other child!"
Our joy was immense. Someone can help our daughter! After another consultation our decision was made, he is our man!
She would be scheduled for a surgery at 18 months old that would bring her feet, tibias and calf bone into position through the use of external fixation.
After two to three months using the external fixation, a second surgery would fuse the tibia and the calf bone. Three months later, the second to last surgery would remove the external fixation and the lower legs and feet would be put in a cast for a few weeks. After removing the cast, Chiara has to use orthoses specially made for her in order to protect her bones.
After that she could start walking on her legs and feet completely on her own. As she grows the lenght of her lower legs has to be adjusted or extended, since they won't keep growing like on healthy children.
But Chiara's ability to walk on her own would be assured by the age of two!
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The surgeries and accommodation in the United States involve a high cost. Unfortunately, the health insurance company refused to cover the costs. You do not want to support us because the procedure abroad is not "necessary" may be. Although no one here can offer us an equivalent treatment and prospect. Even though no one here can offer an equivalent treatment and outlook.
The total cost for the surgeries are approximately 350,000 euros.
That's not something we can accomplish, even as full-time working parents. I, the father, Tino Brunetti, work full-time as industrial mechanic. My wife, Leonarda Brunetti, is currently on a paid parenting leave, but with Chiara's disease is not certain if she will be able to go back to work.
That's why we require help from our family, friends and colleagues, as well help from you, our fellow men and women, who are now aware of our funding campaign.
We can't allow that the privilege of walking and the opportunity of a happy life is denied to our little baby because of financial difficulties.
Our donation account is taken care of by "Haus des Stiftens". The account will be managed by the foundation. The collected funds will be used for Chiara's surgeries and treatment.
Kind regards, Tino, Leonarda and little Chiara Brunetti