My daughter was perfectly normal for the first 18 months of her life… then we received a devastating diagnosis

For the first 18 months of her life, Doron Wolfberg’s daughter, Talia, seemed like any other baby.

She was developing perfectly well – learning to talk, walk and hit all of her milestones.

But Wolfberg was left scrambling for answers when the toddler suddenly lost most of her verbal and motor skills.

The frantic father rushed her to the emergency room but doctors dismissed him, telling him that he and his wife were just being ‘over worried.’

Months passed as his daughter worsened before she was finally diagnosed with a rare condition called Rett syndrome.

Now, Wolfberg has laid bare his daughter’s lengthy health journey exclusively with the Daily Mail, as he recalled his horror upon watching his seemingly normal baby regress so quickly. 

Wolfberg, 41, explained that they first realized something was wrong with their daughter when they were at the mall and she had a ‘huge tantrum’ unlike anything they had seen before.

‘She suddenly started to cry uncontrollably to the point where it was difficult to hold her in our arms as she was crying so hard, moving from side to side and biting our hands,’ he recalled. 

He explained that for the first 18 months Talia, seen here before her diagnosis, developed perfectly normal; she learned to walk and talk and hit all of her milestones

‘She finally calmed down when we got into the car seat and she fell asleep.’

Horrified by the seemingly out-of-nowhere outburst, Wolfberg and his wife felt deep down that something was wrong, so they decided to take Talia to the emergency room.

But the doctors ‘did not find anything wrong with her’ and quickly sent them on their way.

‘Doctors assumed it was just a tantrum and that we are just over worried,’ Wolfberg explained.

But in the next few days Talia had more ‘hour-long tantrums.’ She also started developing other symptoms.

‘She became chronically constipated, started to put her hands in her mouth all the time and would not use her hands for anything else,’ shared Wolfberg.

‘She stopped looking at us and smiling, she started losing her balance often and she was always irritated.’

Wolfberg said ‘things changed very fast’ and it felt like each day that passed she was getting worse. 

But Wolfberg was left scrambling for answers when the toddler suddenly lost most of her verbal and motor skills. She’s seen before the regression

After a length and exhausting process Talia, now five, was diagnosed with Rett syndrome in October 2022, a ‘rare genetic neurological disorder that affects the way the brain develops’

‘It took us some time to understand these are all connected somehow to something bigger happening to Talia,’ he added.

About seven weeks after the first ER visit Wolfberg and his wife decided to go back to the hospital and ‘insisted’ doctors check her further.

‘She stayed in the hospital for a week and underwent nearly every possible test,’ Wolfberg said.

‘When everything came back negative, the neurologist said she had autism spectrum disorder (ASD) but recommended genetic testing. 

‘We didn’t believe it was ASD. We couldn’t find any cases where autism involved a sudden regression, and the loss of motor abilities didn’t fit that explanation either.’

They ultimately decided to get genetic testing for their daughter but that process took another six months. 

After a length and exhausting process Talia was diagnosed with Rett syndrome in October 2022, a ‘rare genetic neurological and developmental disorder that affects the way the brain develops,’ per Mayo Clinic.

Wolfberg explained that they are now in the process of trying to get their insurance company to approve the first FDA-approved treatment for Rett syndrome. Talia is seen recently

Talia, who is now five, is ‘doing great’ and the family feels ‘hopeful,’ Wolfberg said. She’s seen center in her mom’s lap with her siblings and father

‘It was absolutely heart-wrenching,’ Wolfberg recalled of getting the news. ‘I just broke into tears. 

‘It was the type of deep sadness you feel when losing something very precious. After a week or so, however, that feeling slowly started to pass as we [tried to] focus on [being in] the current moment.

‘It was also a big relief [in a way] because we now knew what she had and were also able to meet other Rett parents and had a new network of emotional support and knowledge-base to deal with Rett.’

Wolfberg explained that they are now in the process of trying to get their insurance company to approve the first FDA-approved treatment for Rett syndrome, which was was made available in March 2023.

Talia, who is now five, is ‘doing great’ and the family feels ‘hopeful,’ Wolfberg said.

‘She is a true angel and a fighter who does not give up,’ gushed the father. ‘She works hard with many different therapies, from speech therapy to various types of physiotherapy. 

‘While she can’t speak words she can communicate with certain vocal noises she makes or with her eyes and hands. 

‘She can also communicate using yes/no cards and other visual choice cards to pick games, foods and more.’