I was called ‘drama queen’ for worrying about my son — now he’s on borrowed time

After a decade of being dubbed a “drama queen” as her son suffered debilitating symptoms, a mom has shared the heartbreaking moment she was told her teen son has only years left to live.

Aneta Safiak recently discovered her eldest son Jonatan, 13, suffers from ataxia-telangiectasis, as he was diagnosed with the rare condition — which affects only one in 50,000 people — after living with excruciating pain since he was months old.

“I am so angry,” said Safiak, 45, of Ireland. “We must have seen over 40 doctors, none of them could find an answer and many of them made me feel as if it was just in my head.”

AT is a inherited disorder that affects the nervous and immune systems, as well as many others essential for body functions. Not much is known about the condition, with the estimated life expectancy between 19 and 25 years, according to the National Institute of Health.

Safiak, who tragically suffered a stillborn pregnancy in 2015, has two other children, ages 3 and 6, with her husband and recalls Jonatan being plagued with respiratory infections from a young age. (She requested that the names of her other children and spouse be withheld for privacy reasons.)

Meanwhile, the devastated mom claims to have spent most of Jonatan’s early life taking him to doctors, begging them for help — noting he even suffered a collapsed lung at one point and wobbling around like he was “drunk” — but was still allegedly called a “drama queen.”

“At the time, I thought Jonatan might have had cerebral palsy or a brain tumor — it was so overwhelming,” the mom told NeedToKnow.Online. “I was told to not look for problems where there aren’t any and to not overthink.”

3

3

After visiting more than 40 doctors and various other medical professionals — including pediatricians, eye doctors, surgeons and therapists — Safiak says Jonatan was diagnosed with hyper-mobility joints, or being double-jointed, while other insisted it was skin-related due to swelling around his eyes.

However, she says she knew they weren’t the real reason he was sick.

“My gut was right,” the caregiver added. “One therapist pushed towards a dyspraxia diagnosis, but I didn’t accept this because I knew it wasn’t bringing us any step further to knowing the real problem.”

According to Safiak, Jonatan was constantly falling and weakness affected all parts of his life and was told he shouldn’t attempt to learn how to write — which the determined mom refused to accept.

“I didn’t want that, so I worked hard with him at home and he managed, so he knows how to write now,” she said.

3

After a decade of desperately searching for answers, Jonatan was diagnosed in March 2022.

“It’s going to cause severe physical disability, as it’s deteriorative, and he’ll slowly lose the ability to talk and swallow, as well as being at high risk for different cancers,” Safiak explained, adding she had a “nervous breakdown” when she learned about his diagnosis.

“This diagnosis has been at least 10 years delayed and has deprived my son from care and treatment he deserved, and it has taken a toll on his mental health,” she said.