Tom and Amy Green took their daughter Layla to see a GP after believing she was suffering from a cold
A couple who thought their young daughter had a cold were given the devastating news she was actually living with a rare condition.
Tom and Amy Green from Cleckheaton, took their daughter Layla to the doctors after noticing the tot was suffering a cold. After numerous tests and appointments, they now know their daughter has ERF-related Craniosynostosis - premature fusion of one or more cranial sutures in the skull, which can affect brain development and skull shape.
Amy, 30, told YorkshireLive that Layla, now four, was initially prescribed antibiotics used to treat a viral infection, but was told by the GP to visit the paediatric department at Dewsbury Hospital for a second opinion if they wanted to.
Amy said: "We went there and this GP saw us straight away and we told them the story and he said she was given the wrong tablets as what she'd got wasn't viral. He went quiet and looked at me and said, 'Have you ever noticed her ears are slightly lower and her eyes are slanted?'
"They sent her for a head X-ray and did that there and then. We then got a letter in the post a week or two later for a CT scan at Pinderfields Hospital. She had that and I tried asking the staff there about why they were doing it and a woman said something along the lines of, 'I can't tell you what they're searching for, you're best speaking to the doctor that sent you here, I don't want to panic you'."
Amy said the couple were initially unable to get hold of the doctor from Dewsbury Hospital and around two or three weeks later, received another letter with an appointment for an MRI scan at Leeds General Infirmary. She said: "I thought, 'Something isn't right here.' I was in tears. No one was telling us anything. We managed to get in touch with the doctor that had transferred us.
"He said, 'I am sorry for this, I wanted to make sure what we were suspecting was accurate.' He was describing Layla's sooches to the back of her head. They fuse together when their heads grow and hers had fused too early. If it was just one of them that had done that they would have sent us to Leeds but they had a feel of her head and did everything and they said she had three and were now transferring us to Great Ormond Street Hospital."
Amy and Tom said when the family first went to the world-renowned hospital they went through two full days of appointments with medical professionals including ophthalmologists and the genetic team. Amy said Layla even had to be monitored while she slept.
The couple also had to give a saliva sample to the genetics teams before Layla was diagnosed with ERF-related Craniosynostosis. They found out on Tom's 34th birthday the the ERF gene mutation came from him.
He said: "I was adopted at two-weeks-old so didn't have much detail from my side. The only thing I knew was through documents we got from the Adoption Agency that said nothing other than girls could develop diabetes."
Amy said not much is known about Layla's condition and she will continue to be monitored. She said: "The first paper written about it was in 2019 so it is even new to them [medical professionals]."
She added that Layla will have another MRI scan in November and then a specialist appointment around a week later. She said: "They are doing monitoring that could lead to treatment. At the moment, they won't act. They said that people that have the ERF gene have a higher chance of having an operation and that can stem from four to six-years-old so she's just getting into that bracket."
Tom is now preparing to take on his biggest challenge at the World's Toughest Mudder in June next year at Belvoir Castle, all in aid of the Great Ormond Street Hospital.
He has already raised £1,300 but is hoping for more donations. He said: "I'm meant to be starting training on Tuesday, which gives me 250 days. I haven't been to the gym or worked out in over five years, since I left the military, but I do like to be in good shape anyway. I have never attempted anything like this before - the most I have run is 12 miles when I was in the military."
Over 24 hours Tom will complete an obstacle course. Pit stops are available for food and to change clothes, but Tom will complete challenges every few miles.