The family of a baby boy, who is suffering from up to 24 seizures a day, have told of his battle against the mystery illness.
Six-month-old Archie Benton is believed to have a form of epilepsy and also has nystagmus, which causes uncontrollable eye movement, with fears also raised that the soft spot his head will close too soon.
While specialists continue tests to pin down the exact cause of the problem, his family are rallying round to ensure he gets the best care and to repay the charity which has helped during their toughest times.
NeoAngels, based at the University Hospital of North Tees, helped mum Katie Craggs and dad Adam Benton with essentials while they were by Archie’s bedside and to meet costs such as fuel and parking fees while he was in hospital.
Concerns were raised about his health when Katie was 35 weeks pregnant. Archie was smaller than would be expected, and he on to be born three weeks early.
Within hours he had his first seizure with the next at 11 hours old. At one stage he became unresponsive and was given oxygen.
With all this going on in Archie’s life he is amazingly strong and a fighter.Katie Craggs
He was looked after in its neonatal care unit until he was allowed home for the first time at eight weeks old.
The infant is being given doses of medication doctors would normally give to six-year-old but is still suffering fits, while he continues to undergo scans and tests and regular physiotherapy sessions.
Despite his difficulties, Archie is a happy baby and enjoying settling into family life with Katie, 27, Adam, 30, who has become his full-time carer, their daughter Olivia-Rose, two, and Katie’s children Logan Wardle, nine, and Alicia-Lily Wardle, four.
Civil servant Katie, from Peterlee, said: “He had cannulas in every part of his little body that was possible, he had long lines fitted and was tube fed. “This was the worst time of my life I felt so helpless and I couldn’t make my little baby all better. I didn’t leave his side. He needed me there to talk him through his seizures to reassure him I was there to pull him through.”
Archie has regular visits to a neurologist, epilepsy nurse and has frequent blood tests.
Katie added: “But he is absolutely the most content baby. With all this going on in Archie’s life he is amazingly strong and a fighter.
“He he is such a happy baby always smiling and laughing and takes everything in his stride. He is my baby and we love him so much.”
*The family has set up a donations page to raise cash for NeoAngels, with events in the pipeline, and is also encouraging people to support Epilepsy Action through Purple Day on March 26, when people wear the colour in return for a donation and to highlight the illness.
Anyone who would like to donate to the fund can visit https://www.justgiving.com/crowdfunding/katie-craggs-1.