Maria's Story – A Small Heart, A Huge Fight
Maria's Journey - In Pictures
Each photograph tells a part of Maria's story of courage and hope. From the first difficult days to moments of joy, follow the transformation of a little fighter.
First days
The beginning of a difficult journey - the moment we learned about the heart malformation.
Recent portrait
Maria Natalia, a little fighter with a big heart and a smile that gives us strength to continue.
Moments of joy
The smile that reminds us what we fight for - for the joy and innocence of childhood.
Before Glenn operation
Preparations for the third Glenn operation - a crucial moment in Maria's treatment.
Hospitalization
In the hospital, preparing for the operation that could save her life.
After Glenn operation
After the Glenn operation - the first important step towards recovery.
After second operation
Recovery after the second operation - signs of progress and hope.
After extubation
A moment of joy - Maria breathing on her own again after extubation.
These images are not just memories - they are proof that miracles happen when we unite our forces. Maria continues to fight with a smile on her face, and with your help, she will have a chance at a normal childhood.
The Beginning
Maria came into the world wanted and loved, in our family where there is also a little boy. The pregnancy was carefully monitored, all tests were done, even genetic ones, and nothing seemed to announce the terrible fight that followed.
At birth, Maria received a 10. But her blue lips and palms, low weight and feeding difficulties raised the first questions. Unfortunately, our concerns were ignored by several doctors, and the initial diagnosis came only 12 days after birth... and it was devastating: Common arterial trunk, a serious heart malformation, incompatible with life without immediate surgical intervention.
A race against time followed to save her life. After refusals and delays in the country, the only real solution was the emergency transfer to Italy, to the San Donato clinic. There, doctors saved her life through three surgical interventions, establishing the final diagnosis of pulmonary atresia with ventricular septal defect, but all operations were palliative, meant to prolong her life, not to give her a normal childhood.
Meanwhile, following complex genetic analyses, Maria was diagnosed with ZTTK, an extremely rare genetic syndrome, documented only in 2016 and present in less than 250 children worldwide. This syndrome further complicates her fight, making her ineligible for a heart transplant, the final solution following the next palliative operation.
What's next?
Through our own efforts and with the support of a few close people who guided us, we managed to send Maria's medical documentation to Boston Children's Hospital, a center of excellence recognized worldwide for treating complex cases of pediatric cardiology.
After analyzing the case, the doctors there offered the only real long-term solution:
either a direct biventricular correction (the best option)
or a two-stage plan: a left ventricle growth stimulation operation, followed by complete correction
Decision Process
To make this possible, Maria must urgently reach Boston. Following the discussion with the medical team in mid-April 2025, we were told that the intervention should take place within 3-6 months, so as not to miss the window of opportunity that could save her life.
Thanks to an impressive mobilization and support from people and companies who believed in Maria's chance, we managed to cover the costs of the first intervention and obtain official scheduling for September.
Financial Investment
Received estimate: $361,000 – investigations, hospitalization and first operation.
Logistics costs (transport, post-operative accommodation), recovery
The cost of the second operation that could follow one year later, whose cost has not yet been estimated, but which will be similar to that of the first intervention according to the medical coordinator.
A complex period follows, in which Maria will be evaluated and operated on in the United States, and post-operative treatment will involve constant investigations, careful monitoring and, possibly, a second intervention one year apart, a decision that will be made following on-site evaluations.
Update - September 2025
After medical evaluations performed at Boston Children's Hospital, doctors determined that option 1 (direct biventricular correction) is not possible in Maria's case due to insufficient left ventricle size.
Maria successfully underwent the first of two surgeries outlined in option 2 - the left ventricle growth stimulation intervention. This represents the first essential stage of long-term treatment.
Maria's heart will be strictly monitored to track the growth of the left ventricle. The second surgery, the biventricular repair (the final one), is necessary to take place approximately one year from the first intervention, depending on the progress and development of the left ventricle.
According to the hospital, the cost of the second intervention will be similar to the first surgery, but cannot be estimated accurately at this time. As we receive updates from the medical team, we will communicate them.
Maria doesn't know how hard her fight is. She smiles, clings to life and learns step by step what it's like to be a child.
We, the grown-ups, can do the rest!
How can you help?
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