A mother has spoken of her anguish after doctors allegedly dismissed her concerns about her baby’s seizures as “maternal anxiety,” leading to months of untreated episodes and developmental regression. Olivia Matyus is now fundraising for further specialist stem cell therapy abroad, hoping it will allow her daughter, Ingrid, to continue making progress.
Ingrid, now four, was born “healthy” in April 2021. However, at three-and-a-half months old, during a trip to Romania for her christening, she began experiencing seizures that caused significant developmental regression. Olivia, a 38-year-old custodial manager, recalled that before the seizures, Ingrid could hold her head up and smile socially, but afterwards, she became “blank and absent.” Olivia explained: “After the seizures, she went completely back to zero, as if she was a newborn. She couldn’t hold her head up, she lost her social smile, and just looked blank and absent.”
Upon returning to the UK in September 2021, Ingrid’s doctors at Luton and Dunstable Hospital managed to control her seizures with steroids and anti-seizure medication. However, Olivia said that when Ingrid was weaned off this medication in December 2021, she began having 10 to 15 seizures daily. Despite Olivia sharing videos of her daughter’s head dropping and eyes rolling back, a consultant allegedly dismissed her concerns.
“The consultant who was in charge of her said that they are not seizures and refused an EEG test,” Olivia claimed. “It took me literally calling them on a daily basis because I knew that something was wrong to get a response.” She added: “The consultant told me it’s just maternal anxiety and I should just stop worrying. I just burst into tears, and I felt so stupid, because I knew something was wrong with my baby, but he was just ignoring me. He agreed to do an EEG and said ‘it would calm my maternal anxiety’.”
Tests in April 2022 confirmed Ingrid had been suffering from untreated seizures for approximately three-and-a-half months, causing further regression. “She wasn’t engaging with us at all, she was in her own world,” Olivia said. At the end of 2022, Ingrid was diagnosed with a rare PHACTR1 gene mutation, leaving doctors uncertain about her future. “There’s barely any research on her gene mutation because it’s so rare – we couldn’t find anyone in the UK with the same mutation,” Olivia noted. “We just hope someone picks up an interest in it and researches it so we can find out more.”
Through their own research, Olivia and her husband, Csaba, an HGV driver, decided to pursue stem cell therapy, which is not available on the NHS. Ingrid has since undergone four rounds of treatment in Slovakia – three in 2023 and one in 2024 – costing around £15,000 each time. Olivia reports that Ingrid has been seizure-free since 2023, and the therapy has brought significant improvements.
“That’s when she actually started giving us eye contact and engaging with things around her,” Olivia said. “She can chew now – before she had to have blended food. She can walk, although she is wobbly – we think we need to carry on with the stem cell therapy to help her keep progressing.” Despite the challenges, Olivia describes Ingrid as “the happiest child” she has “ever seen.”
The family, who now live in Northampton, also fund additional private play therapy and physiotherapy, alongside NHS support. They have also taken Ingrid to Bucharest for brain remapping and training sessions. “We work as much overtime as possible to be able to cover everything, we’re willing to try anything,” Olivia stated. They have launched a GoFundMe campaign to raise £20,000 for another round of advanced stem cell therapy at a specialist clinic in Panama.
Olivia expressed her hopes for Ingrid’s future: “It would mean everything to us if we got to the target. Small things like getting rid of her nappies and being able to communicate a little more would be amazing – these are huge to us.” However, she also voiced fears about Ingrid’s long-term care: “My parents won’t be here one day and as she gets older she might not be able to look after herself. I’m terrified of what will happen to her if something happens to us.”
Mr Paul Tisi, medical director at Bedfordshire Hospitals NHS Foundation Trust, said: “We are very sorry to hear how distressed Ms Matyus has felt about her daughter’s condition and her experiences at the Luton and Dunstable University Hospital. Caring for children and supporting their families is extremely important to us, and we always aim to work in partnership with parents when managing complex neurological conditions.”
He added: “While we cannot comment in extensive detail on individual patients due to our duty to protect confidentiality, we can confirm that Ingrid was assessed urgently on arrival into our care and that appropriate investigations, treatment and referrals (including to tertiary specialists) were made in line with national NHS guidance and the eastern paediatric epilepsy network.”
Mr Tisi concluded: “We are sorry that the family felt their concerns were not heard in the way they hoped. However, our records show that the team remained in regular contact, responded to inquiries and took all concerns seriously. We are committed to providing safe, compassionate care and encourage any family who is worried or unhappy about any aspect of treatment to speak with us directly so we can offer support.”
To donate to Olivia’s GoFundMe, visit: www.gofundme.com/f/can-you-help-ingrid-keep-smiling-through-every-adventure
