Every night death claims him! We have to pay for the life-saving surgery in May!

Daniel Kaczmarek
Fundraiser finished

Every night death claims him! We have to pay for the life-saving surgery in May!

Fundraiser goal:

Diaphragm Pacing System surgery

Daniel Kaczmarek, 18 years old
Plewiska, wielkopolskie
Congenital central hypoventilation syndrome (CCHS), also known as “Ondine’s curse”.
Starts on: 25 April 2022
Ends on: 31 May 2022

Fundraiser description

Every night when our son goes to sleep, we tremble with fear. We are scared that Daniel might not wake up and suffocate to death in his sleep! The terminal disease causes a complete lack of spontaneous breathing. He needs to use a mechanical ventilator! 

The only hope is surgery to implant a device called Diaphragm Pacing System. It causes the diaphragm to contract. Unfortunately, the cost of the surgery is up to 500,000 Polish zlotys! We are asking you for support from the bottom of our hearts! 

Fear has been our companion for 17 years since Daniel was born. In the second hour of his life, he developed a breathing disorder. Daniel spent the first six months in the ICUs of several hospitals. He bravely handled many painful tests and was persistent in a fight to survive every day. 

We were running around between the hospital and our home, where was our second baby, his twin sister Paulina. It was a difficult time for us. We were terrified, hopeless, and waiting for the diagnosis...

The doctors could not diagnose the disease for many weeks. After three months, we found out the truth, which was devastating.

Our son suffers from Congenital central hypoventilation syndrome (CCHS), also known as “Ondine’s curse”. It is a rare, genetic, and potentially deadly disease. Its symptom is poor breathing, especially during sleep, as if the body “forgot” to breathe. 

A ventilator has allowed him to breathe for 17 years...  

The diagnosis turned our lives upside down. It filled us with fear about his every breath. The tracheostomy tube placed in his throat to allow him to breathe caused many side effects. Often intubations resulted in larynx tumours and pneumonia. Daniel also has epilepsy and bronchopulmonary dysplasia. Currently, our son has been put on noninvasive nasal mask ventilation. Unfortunately, this method is far from perfect since it causes malocclusion and craniofacial malformations. A fight for Daniel's health is expensive. To allow his correct development, we have to provide him with specialised medical care, physical therapy, and speech therapy. Currently, our son is in high school (2nd year). 

Lately, Daniel has been offered an opportunity to undergo a Diaphragm Pacing System surgery. In June a brilliant Swedish doctor, Dr Pele Nilsson, will come to Poland. He can perform surgery in the neurosurgery ward of the Copernicus hospital in Gdańsk. The device implemented in his chest will allow Daniel to breathe without a ventilator once and for all! 

Unfortunately, the surgery costs almost 500,000 Polish zlotys and is unreimbursed by the National Health Fund. To make it happen in June, we need to raise funds in May! Time is running out, but we want to do everything to set him free from the ventilator and offer him a better life.

Please help us! Let him breathe! 

Take your time. Breathe deeply. Breathe slowly and mildly. Inhale a nice, sweet nihility of life, so full of energy, so full of love". 

Neale Donald Walsch. Conversations with God. Book 3. 

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