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.”
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, saying it was “just maternal anxiety.” Tests in April 2022 confirmed Ingrid had been suffering from untreated seizures for approximately three-and-a-half months.
At the end of 2022, Ingrid was diagnosed with a rare PHACTR1 gene mutation. Through their own research, Olivia and her husband, Csaba, decided to pursue stem cell therapy, which is not available on the NHS. Ingrid has since undergone four rounds of treatment in Slovakia, costing around £15,000 each time. Olivia reports that Ingrid has been seizure-free since 2023, and the therapy has brought significant improvements, including the ability to chew and walk, albeit unsteadily.
The family, who now live in Northampton, have launched a GoFundMe campaign to raise £20,000 for another round of advanced stem cell therapy at a specialist clinic in Panama. 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.”
