A baby boy born with a large birthmark on his face has been diagnosed with an incredibly rare disorder that affects the skin, brain and eyes.
First-time parents, Bethanie Rollings, 22, and her partner Tim, 26, were given the devastating news just weeks after welcoming their son Oscar, who is almost three-months-old.
He has Sturge-Weber syndrome, which is known for the large 'port wine stains' that it causes on the skin of the few affected by it.
Bethanie, from Peterborough, Cambridgeshire, said Oscar recently suffered his first seizures, which are symptoms of the syndrome, including one that lasted 40 minutes.
She told CambridgeshireLive: "When he was born we noticed he had quite a large birthmark on his face.
"The doctors said it could be a birthmark, or bruising because I had quite a traumatic labour.
"We didn't know much about Sturge-Weber until he got seen for his jaundice and they explained when babies have birthmarks like Oscar's it can be Sturge-Weber.
"We read up and it said around 80 per cent of babies that had Sturge-Weber could have seizures, so we were kind of expecting it.
"That was about four weeks ago, and on Thursday night (28 November) he had his first 40 minute seizure.
"We were expecting it in a way, but you don't expect it as well."
Oscar had a seizure while undergoing an MRI at Peterborough City Hospital.
When he was discharged on 30 November he had a seizure within 10 minutes of arriving at home and was readmitted after being taken to hospital by ambulance. He was allowed home again on Wednesday.
Bethanie said: "In a week, he's had 10 seizures and they've just been trying different medications.
"As he develops, the condition develops with him so it's constantly trying to keep up with his medications."
Watching Oscar suffer a seizure is an agonising experience for the parents.
Bethanie said: "You feel kind of helpless, but it's something I'm going to have to get used to.
"It's not like epilepsy where you can take your medication and go seizure-free.
"It's about making them as few and far between as possible."
Longer seizures present a risk of brain damage and complications in the future, so Bethanie and Tim need access to specialist equipment that can help them to detect the seizures as soon as possible.
Family and friends have launched a GoFundMe page to help to pay for the equipment, raising almost £1,000 after setting an initial target of £500.
In the future, the parents will have back-and-forth trips to Addenbrooke's Hospital in Cambridge and Great Ormond Street Hospital in London to see specialists.
They are speaking out to raise awareness about Sturge-Weber syndrome, which affects one in 20,000 to 50,000 individuals, according to the US National Library of Medicine.
Offering advice to new parents, Bethanie said: "I'd tell them to keep a look out if it's quite a large port wine stain. It is really hard, but if you're concerned just keep an eye on them.
"The first sign for me would be the seizures, but if your baby is born with this port wine stain, they come in a lot of different shapes and sizes.
"It's all about keeping a close eye.
"Some kids with Sturge-Weber won't have a seizure until a year or six months old, but it's being aware and speaking to as many people as they can."
