Our beautiful daughter, Elena (Elenka in Polish) was born happy and healthy, with bright, wide-open eyes and a strong cry.

At just six weeks old, everything changed overnight. Elena suddenly lost the ability to open her eyes normally, and her eye movements became abnormal. Since then, we have spent months in hospitals and with specialists searching for answers.

Elena has undergone multiple MRI scans, whole-genome genetic testing, lumbar puncture and CSF testing, extensive blood tests, EMGs and specialist assessments. She spent almost two months in hospital earlier this year, including treatment at the Royal Children’s Hospital in Melbourne.

Despite all of this, we still don’t have a diagnosis, the doctors noted it down as a genetic condition from birth from a gene sequence that hasn’t been discovered but unfortunetly with time more neurological issues arised.

Elena can now open one eye at a time, alternating sides, but her development has been significantly affected. Her MRI has also shown more white-matter changes than expected for her age, raising further questions.

More recently, Elena has developed severe episodes of jaw clenching and involuntary movements. She can bite her tongue, lips and cheeks until they bleed, causing painful wounds and ulcers. She has struggled to eat solids and has also had difficulties with feeding and hydration.

Doctors are investigating whether these episodes could be seizures, dystonia or another neurological disorder. EEG monitoring has not provided a clear answer, and several medications have been tried. At times, the episodes have become so severe that despite all the previous sedative medication, Elena has been put into a induced coma to protect her from further injury and allow her body to rest.

Her combination of symptoms does not fit neatly into one condition, and we have been told her doctors have not seen a case quite like hers.

We are determined to keep searching for answers and give Elena every possible chance to receive the right treatment. This may mean further specialised testing, therapies, interstate consultations or potentially travelling overseas to a specialist centre.

We own and operate a small family business in Tasmania and Ankit has already used up all paid leave leaving us with no current income while at hospital and we had to use our savings for the long hospital stay at the start of the year. Elena’s two-month hospital stay earlier this year already had a significant financial impact on our family.

The funds raised will help with:

*Covering expenses while missing income due to the hospital stay

* Further testing, medical expenses and specialist consultations

* Therapies and equipment to support Elena’s development and safety

* Travel and accommodation for medical care

* Potential interstate or overseas specialist consultations or treatment

* Lost business income while caring for Elena

We have never imagined asking for financial help, but right now our priority is Elena. We want to be able to say yes to the specialist, test or treatment that could finally help her—wherever that may be.

If you cannot donate, sharing Elena’s story means just as much. Perhaps it will reach someone who has experienced something similar, knows a specialist who could help, or can connect us with another family who has walked this path.

Most importantly, we hope that by sharing Elena’s journey, we can finally find the answers that have remained out of reach for so long.

Thank you for supporting our family and helping us give our little girl every possible opportunity. ❤️

Laura, Ankit & Elena