Noa’s Glow Story

Diagnosis: Coats Disease

Ana Sebrek is no different than any other mother trying to protect her child. “If I could bubble wrap my son, plus goggles and plus a helmet, I would!” she told Megan Webber, Co-Founder of KnowTheGlow. As Megan has learned from  speaking with so many families, all the protection in the world can’t offer such iron clad protection; but with mothers like Ana sharing their inspiring stories, we can definitely raise awareness so that we KNOW what to look for and can find the right path to care. 

The Sebrek family is from Velika Gorica, Kuče in Croatia. Megan is so humbled to share their story so that the KTG community can see how KTG can help to connect families with providers around the world.  Ana’s son, Noa, was ultimately  diagnosed with Coats’ Disease but  unfortunately, by that time he was already Stage Four. Initially, when Ana first noticed that his right eye was floating right to left with no control, she went to the pediatrician only to be told that was normal for an infant.

After Noa’s first birthday, Ana noticed the glow. Coincidentally, Ana was taking her older daughter to get glasses so she brought Noa along and asked again.  Once more, she was told not to worry, it was nothing. Six months later Ana persisted at which point they performed an ultrasound on Noa but still couldn’t determine what was going on with his eye. When they did the MRI, they knew it wasn’t retinoblastoma and were suspicious that it was Coats’ Disease. In Croatia,  they did not have the resources to do a deeper dive with Noa, especially since he was the only active case in all of the Balkans. 

Nenad Vukojević was the ophthalmology specialist who ultimately diagnosed Noa with Coats’ Disease.  Dr. Vukojević was wonderful and told them that sadly there was nothing more he could do to help Noa and that within the system of Croatia he was not permitted to tell them to go out outside of the country to get help. She was going out of her mind searching the internet but he continued to give her the moral support she desperately needed to find help for Noa.  At that point she rolled up her sleeves and started searching the internet.  When she first googled Coats, all that  pulled up were the winter coats that you find in stores, not Coats’ Disease. She continued her search and reached out to NGOs, Jack Mcgovern Foundation, and KnowTheGlow.  At this point, Megan went into action.  If a doctor can treat RB, then they should be able to treat Coats’ Disease. Megan reached out to Monika Konig with KAKS   ( and she was able to connect Megan with a doctor in Switzerland, Dr. Francis Munier who was willing to take on Noa’s case. Dr. Munier was connected with Ana, and Ana was connected with Dr. Vukojević who was collaborative and helpful wanting what was best for his young patient. 

When Ana emailed Dr. Munier, she was overwhelmed with how responsive he was.  His entire team was amazing. Everyone was warm and open to conversation. At first, Ana was leery that Dr. Munier would maintain an active role with Noa given that he has such a large team. As  it turns out, Dr.Munier, alongside his gracious colleague Dr. Christina Stathopoulos, was with them every step of the way, all the way through to enucleation. 

Everything was moving so quickly and the reality of the cost to make all this happen for Noa was becoming a roadblock. It was going to be very costly to travel there, get the surgery and complete the followup treatment and prosthetics.  Ana had an idea to open an organization with the help of the VG Legacy organization to raise money to get Noa to Switzerland and to her surprise, the city and the media stood up for Noa. Ana and her family went on local television and publicized in the local newspapers.  The phones were ringing nonstop from all over the world from Australia to Germany!  It was a leap of faith for the Sebrek family as there is a lot of fraud in her country where people deceptively raise money for “sick “ kids; but people saw the truth and trusted the family and their cause and understood what needed to be done.  They even banded together in a local food festival in their town where nearly all the restaurants got together selling their food and pastries to raise money for Noa. 

Before they left for Switzerland, the community told the Sebrek’s that they had to collect some papers before they left.  When they showed up at the crack of dawn (5 am!!), the Sebrek’s were greeted by group of their friends from VG Legacy all singing and waving flags and signs wanting to say goodbye and good luck to Noa as he went off on his first trip to see Dr. Munier! 

On this first trip to Switzerland, the family was hoping for a treatment protocol that would save Noa’s eye; but by the time they saw Dr. Munier in Switzerland  (a period of only 2 weeks), Noa’s eye was already stage 5 and had exploded leaving enucleation as the only option.  Noa was scheduled for enucleation in December, but when they arrived there, he came down with a fever which delayed them 5-6 days until the fever had passed and he had been cleared of the possibility of Covid-19.  The family was so disappointed because they had gone all that way, only to be sent back home.  Ana, always trying to find the silver lining, found herself realizing that Christmas and Noa’s 2nd birthday on December 21st, were coming up and that with enucleation postponed, he would be able to celebrate with both eyes.

After more fundraising, Noa went off again to Switzerland for his enucleation on January 20th.  He was truly amazing!  When he woke up from anesthesia he had no problem eating and drinking.  The next day, Friday, he was cleared to go home but they were hesitant to rush back so they waited for Monday to have a checkup with Dr. Munier to make sure all was safe and well for Noa to travel back home .  Ana could hardly believe that over that weekend Noa was actually playing football!  Back home in Croatia, Ana continued to marvel at the care. They took Noa back to Switzerland on March 17th to get fitted for his prosthesis and within 24 hours he had his new eye! (In Croatia this would have taken much longer). 

Ana wants to take her experience and pay it forward and is actually trying to help another family who reached out to her after reading about Noa in Ana’s blog. This family’s child had a similar problem  (possible PHPV) to Noa and while Dr. Munier could not accommodate this child in time, they were able to find a doctor in Manchester that could see the baby within 10 days. In this case they cannot treat the infant until he is a year old (only 1 month old at the time) but having the second set of eyes confirm his diagnosis was invaluable to the young family.

Back at home, Ana keeps her blog going so that their journey is documented and  is readily available for other families to see and she continues to help Noa get back into a normal life. This is not always so easy as there is a propensity to treat Noa as if he is fragile or different and Ana just wants him to experience as normal of a childhood as possible. Finding the right school with the right environment is key. She is cautiously optimistic that they will accommodate this simple request of normalcy but she will have to just wait and see and continue to actively advocate for him.  It is families like the Sebrek’s who help to open the eyes of our KTG families and beyond as to how we can affect each other’s lives by just reaching out and making connections. Awareness and early detection continue to be key in finding these cases and educating families around the world on how to Know the Glow!