English version
To breathe and eat by myself 💜
Hi! My name is Kira. I was born in February 2021 and what a struggle it has been since! Let me tell you the story of my life. Because life is something people often take for granted. And maybe our journey will take us to London as well.
I was born with a very rare and serious developmental defect – a laryngo-tracheo-esophageal cleft (LTEC) type IV that disrupts both the gastrointestinal and upper respiratory tracts. In order to breathe and eat by myself in the future, I need a challenging surgeries. More information about my disease is here.
My mom says I am a happy and resilient little girl who loves to laugh and play. My brain is OK so my condition is a matter of physical barriers in my digestive and respiratory systems. There is a good chance of a significant improvement in my quality of life – all I need are successful surgeries. However, the surgeries are very risky and anything that might go wrong would be irreversible.
As there are only three other children with this developmental defect in the Czech Republic, the doctors at Prague’s University Hospital in Motol do not have enough experience with the treatment. Therefore, also on their recommendation, we turned to Great Ormond Street Hospital for Children in London 🇬🇧 where they could perform a major surgeries. In November 2023 doctors or perhaps magicians conntected my digestive tract. Now I have a tube to my small intestine called jejunostomy I am fed through by special nutritional milk but I am slowly learning how to eat. They also stabilized the airway and trachea in May 2024 (now I have a tracheostomy - a tube in my neck I breath through). They would also looked at my vocal cords, which are not yet fully functional. First two and half years I was completely silent and I used sign language to communicate. After visit in GOSH, they helped me to repair one vocal cord so all family is super happy that I can at least make some noise now a tell my Mum and Dad how much I love them. But there is still a huge field where I still need some help and magic.
In January 2025 I am going back to London and all procedures will be in the ENT area. I hope they will help me to better swallow, speak and breath. The plan is to get rid of the tracheostomy tube but this will take some time and journey.
The surgeries and incidental expenses associated with our stay in London are very expensive. The health insurance company is covering my stay in hospital so far. However, there are other medical expenses associated with the surgery that will not be covered for sure. That is why we are looking for help elsewhere, for example through fundraising or charity.
I will be very happy if you become part of my difficult but adventurous journey. Thanks to you and your help, I believe that one day I will be able to eat, breathe and say something with my own voice. From the bottom of our hearts, thank you to everyone who finds it nice to help me, a smiling and sometimes slightly disobedient little girl who enjoys every day of her life that has been so rough to her.
How to help?
Any help is greatly appreciated. One form of help can be your following my story here or on social media and sharing it among your friends and family.
I will be very grateful for any financial contribution. We will use it only for medical expenses at home and abroad, special nutritional milk (now we have to buy it abroad), therapies (occupational therapy, hippotherapy, physiotherapy), vitamins and medicines, sign language courses, personal assistant services as well as medical, rehabilitation and compensation aids for which the health insurance company contributes only partially or not at all.
Thanks to you and your help, I believe that one day I will be able to eat, breathe and say something with my own voice. Thank you very much for your support. Thank you for thinking of me, for caring about me and for every kind word. Thank you for not letting me down. 💜
Transparent account (Czech Republic)
Bank account number: 2702356625 / 2010 (Fio banka, a.s.)
IBAN: CZ23 2010 0000 0027 0235 6625
BIC: FIOBCZPPXXX
Bank account owner: Perglerová Soňa
Bank account name: Sama dýchat a jíst (pomoc Kirce)
PayPal
Mom’s account - paypal.me/skyecz
