Help us give Daria a chance at a normal life!

We need a miracle, and you can make it happen!

At this stage, any small help can make a huge difference the difference between life and death.

Our little bundle of joy, Daria, was born with congenital diaphragmatic hernia the diaphragm which separates the thorax from the abdomen is missing, which allows for the stomach and the intestines to move up into the thoracic box, thus blocking the development of the left lung.

Unfortunately, misfortunes never come singly. Further testing revealed gruesome diagnoses: an immunodeficiency disorder as well as problems related to neurology, pulmonology and even genetics.

On top of this, we’ve found out that our little one’s liver is enlarged and exhibits above average values.

We are at the end of our tether and in order to continue with vital treatment and hospitalisation, we require your help.

We need 100 ooo € for medical treatment

  • How much we got until now: about 50 000 € 50% 50%

Daria’s story

Every parent in this world wants the best for their child. So do we.

Unfortunately, our story and Daria’s is one with an open ending.

How we found out abour Daria’s health problems

It all started when we went for a routine check-up at Odobescu Hospital in Timisoara. Ionela was 16 weeks pregnant at that time.

The gynaecologist told us that something wasn’t right and that we had to repeat the ultrasound.

During the second scan the doctors said that they couldn’t properly make out the heart, which was an indication of congenital diaphragmatic hernia.

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As a result, they suggested having an abortion, on the premise that we were a young couple that could have other children in the future.

That same day we contacted a different doctor from the Premiere Hospital and made another appointment.

The specialists there confirmed the diagnosis of congenital diaphragmatic hernia.

What happened next

As you can imagine, we desperately wanted to get a another opinion. A friend of ours suggested we went to a hospital in Turin, Italy and so, we did.

On August 2019 we arrived at the Obstetrics and Gynaecology Hospital Sant’Anna.

There we were told that after the birth we could correct the defect, thought that made us very happy because Ionela’s insurance would then cover the procedure.

Our happiness was a brief moment in time

Ionela gave birth on the 12th of November 2019, 4 weeks before her due date. Daria, our daughter, was immediately transported to the Intensive Care Unit of the Queen Margherita Paediatric Hospital in Turin where she was quickly intubated.

Our baby underwent two surgeries, the first one just 3 days after she was born, and the second one a month after.

We went through two episodes of septicaemia, during which the doctors tried different ways to eliminate the excess water Daria had in her lungs and in her body, all whilst trying to get her to breathe without intubation.

To no avail. These procedures proved unsuccessful and, on 26th of December 2019, Daria’s life was almost extinguished because she couldn’t breathe on her own.

She was saved in the nick of time thanks to a surgical intervention called tracheostomy which meant staying intubated for 4 months while the doctors ran tests.

Those later uncovered an immunodeficiency disorder, neurological, pulmonology and genetic problems.

The immunodeficiency and genetic tests are underway; they were sent to a laboratory in Freiburg, Germany, at the end of April 2019.

Where does that leave Daria now

We have received the biopsy and MRI scan results (for her liver) and it has been confirmed that she suffers from sclerosant cholangitis a rare chronic disease that slowly damages the bile ducts.

The treatment for sclerosant cholangitis is a difficult one. Because the mechanism and process behind the disease is not yet fully understood, it is very hard to identify the most appropriate therapeutic approaches.

As of today, a liver transplant is the only chance she has to live.

P.S. I’m sorry I have to give you this piece of news and potentially make you sad. We are trying to stay positive despite being devastated. We strongly believe that God has a plan for Daria and we most certainly won’t stop praying.

P.S.2 Thank you again for your all your support and if you need further details or wish to contact us, do not hesitate to write or call.

UPDATES

Update: news about Daria’s health situation

31.07.2020 We finally received the genetic test results from Freiburg, Germany, confirming that Daria suffers from Wiedemann-Steiner Syndrome with a mutation in the KMT2A gene. Currently, her neurological state seems to be improving. Daria’s case is special...

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