The story of a little warrior with three ears

Chudenice / Organizer: Irena Šimpachová zc.liame@08siri

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The story of a little warrior with three ears

Amount raised 173 301 Kč of 389 017 Kč goal
Left 12 days
45 % z původního cíle
The campaign has ended 26. April 2024

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Meet Dominic, a four-year-old boy full of joy and courage who continually overcomes challenges many of us have never heard of. Dominic has the rare Goldenhar Syndrome, which brings him many physical hardships, but his indomitable will and joie de vivre are extremely inspiring. Your support for this fundraiser will be used for special aids and care. Dominic's smile will be your reward for helping him.


Dominic was born as part of an at-risk pregnancy. During week 29, nearly three quarters of a liter of excess amniotic fluid was removed. Despite the fact that the birth then took place at term, it brought with it a few surprises.


The first shocking surprise : Three Ears Syndrome

Dominic was born with short long bones and three ears, the first shocking discovery associated with the future syndrome. Other complications were also revealed, including a transverse cleft lip, a shortened right jaw and non-functioning joints in the lower jaw.


Diagnosis.

The birth was followed by an ENT examination in Pilsen, which brought us to the University Hospital Královské Vinohrady in Prague. Here we received an overwhelming diagnosis - Dominik suffers from Goldenhar Syndrome, specifically Oculo-Auriculo-Vertebral Spectrum (OAVS) or Oculo-Auriculo Vertebral Dysplasia (OAV).


Surgical journey : The Struggle and Escalating Complications

A series of surgical procedures followed, including removal of the third ear, transverse cleft lip and inguinal hernia. With each surgery, we faced new challenges, including caring for fistulas that repeatedly formed. Dominic underwent multiple anesthetics and operations, which was very challenging for him and for us.


Health Challenges: Streptococcal tonsillitis and laryngitis

Our journey was not just about surgical procedures. Dominic faced many health complications, including strep throat, mononucleosis and laryngitis. In addition, we faced hearing problems until we finally discovered that Dominic needed a bone-anchored hearing aid.


Day care: Feeding with gastric tube 

At the moment, Dominic requires extensive full-day care. He needs special communication through sign language, is fed through a PEG probe and depends on assistance with activities of daily living. In addition, he struggles with genetic defects such as brittle long bones and inadequate tooth enamel.


Future: Further surgery until adulthood 

There will be another series of surgeries in the future, including surgery on his right ear and surgery related to genetic defects. Dominic will also have his teeth pulled and crowns fitted, which presents another challenge. It is only when he enters adulthood that doctors will break and enlarge his lower jaw to a normal size and Dominic will receive dental implants.


Support: Fundraiser for Dominic

This whole journey has been challenging, exhausting and financially barely manageable for Dominic's parents. Dominic's father even gave up his beloved job to go abroad to earn the necessary funds. Your support and donations to the charity are therefore crucial. Every contribution brings hope and helps to combat the pitfalls that Goldenhar Syndrome has brought. Thank you for every kindness and support!




Jak se vede Domískovi

27. 03. 2024

Ahoj tak momentálně má Domík začínající zápal plic. Snad to ustojíme doma😟.

Momentálně by jsme měli být tři měsíce bez hospitalizace až do května. Tak snad to dáme drž te na palce.

Moc děkuji , že jste s námi.

🍀🍀🍀🍀


Velké díky všem štědrým dárcům

26. 03. 2024

Velké díky všem, kteří pomáhají Domískovi v boji s jeho syndromem , ke kterému je přidružené nejen několik genetických vad, ale i komplikací, který přináší jeho syndrom. Tento moment jsme na 27 % vybrané částky a já si toho nesmírně vážím.

Domíska v květnu ne jedna , ale cca 3 anestezie. Operace očička, výměna sondy PEG a vyšetření v Motole pod anestezii.

Momentálně rahabilitujeme chodidla , kyčle a posiluje celé tělo vzhledem k jeho úzkém páteřnímu kanálu a křehkým kostem a pilujeme znakovou řeč

Všem moc děkujeme.

Maminka s Domiskem ❤️❤️❤️❤️



Poděkování

14. 02. 2024

Chtěli by jsme Vám s Domískem moc poděkovat za to jak se díky Vám naše sbírka pro Domcu rozrůstá. Minulý týden jsme obsolvovali vyšetření CT v celkové anestesii ve Fn nemocnici Motol. V Květnu čeká Domcu další zákrok v anestezii a to odstranění vyrustku na spojivce na pravém očku.

Děkujeme Všem, kteří nám drží pěsti.

JJe to pro Domiska opravdu náročné.

Všem moc děkujeme.

Patrons 1

2771

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339 donations

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1 500 Kč — Matyáš Malý & rodiče about 8 hours ago

“Hodně štěstí!”
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“Celé rodině přeji hodně sil vše zvládnout.”
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