Diagnosis: Retinoblastoma
Zsolt Daniel and his wife, Mariateresa, were living in Caracas, Venezuela when Covid-19 began to spread across the globe. They had many concerns about the welfare of their friends and family with the pandemic but were especially concerned about the health of their two young children. Given the magnitude of the global threat, they were not overly worried when they first became aware that their daughter Isabella’s eye would occasionally wander. Isabella was only 18 months old and they assumed this was fairly normal for such a young child. They waited a month for Isabella’s next pediatric well visit to discuss what they were noticing.
At this visit, their pediatrician also recognized the misalignment. Concerned about the cause, they were referred to a renown ophthalmologist who specialized in pediatric misalignment. After a thorough exam, this doctor informed them that Isabella’s retina was detached and had fallen under the eye. She was completely blind in that eye. They were told there was nothing that could be done to help improve her vision and were advised to put it behind them and move forward with life. Zsolt Daniel and Mariateresa were not content with this suggestion and searched out a retina specialist for a second opinion.
The retina specialist had a much different recommendation. This doctor believed Isabella’s retina could be re-attached with surgery. If successful, she could re-gain 30 – 40 % of her vision. However, the doctor did also share with them that it was possible that Isabella’s detachment could have been caused by Retinoblastoma (cancer of the retina). If this was the case a much different treatment would need to take place. They were sent to see Dr. Livi Romero to rule out RB.
Zsolt Daniel and Mariateresa were shocked and frightened to learn that their daughter may have cancer. They were determined to find answers and treatment and immediately took Isabella see Dr. Romero.
Dr. Romero confirmed that Isabella’s retina had detached and had fallen under her eye. She said that the retina itself had calcified. Never having seen this situation before she advised the family not to move forward with the retina operation until they could determine the cause of her condition.
In December of 2020, after a series of test and exams, Dr. Romero determined that Isabella did in fact have Retinoblastoma. She needed immediate care to save her life. Unable to find this care in Venezuela, they made arrangements to travel to Mariateresa’s homeland of Italy. They family soon found themselves on a plane to Rome.
They were met with open arms at the Bambino Gesu Hospital in Rome. Here they were under the care of Dr. Paola Valente. They started chemotherapy with Isabella but soon realized they were too late for the chemotherapy to help. Faced with the possibility of her cancer spreading, they made the difficult but life saving decision to remove her eye. On January 15, 2021 Isabella’s eye was enucleated.
Isabella and her mother stayed in Rome for eight months. During this time, Daniel had to stay primarily in Caracas with their other child. Isabella did very well in the months after her surgery and received a prosthesis that she adapted to quite easily.
Finally, in July of 2021, the family was able to reunite in Caracas. Currently Isabella sees Dr. Romero every month to make sure there is no re-growth of her cancer. They will travel back to Rome in June of 2022 to have a final MRI and to have some genetic testing done.
Isabella is home and doing beautifully! She is now two years old and loves to sing and draw and play with her eight year old brother. She is hitting all of her developmental milestones and will start daycare next month.
Zsolt Daniel says he has only found one photo where Isabella exhibited the Glow. He found this image while looking through his photos of Isabella on the flight to Rome. Daniel was shocked to discover this photo as it was taken in March of 2020. He had never noticed the Glow before. Even though the Glow did not lead them to Isabella’s diagnosis, he now realizes the importance of this often missed sign. He and his wife are determined to share their story to highlight just how important it is to act when you notice any change in your child’s eyes. They hope that by sharing their journey they can help save the vision and even the life of another child.
At KnowTheGlow we are proud to share their story and thankful that, after an initial missed diagnosis, Zsolt and Mariateresa followed their instincts and found their way to the incredible doctors who ultimately guided Isabella to the care she needed.
