When little Oscar Williams was just three months old he was diagnosed with a very rare condition which caused the bones in his skull to prematurely fuse together before his brain was fully formed. If left untreated it can lead to many serious complications including a deformed head, seizures, and increased pressure on his brain.
Now, ahead of his first birthday, the ever-smiling tot is set to undergo an operation at Birmingham Children's Hospital in the hope of fixing his misshapen skull and improving his quality of life. Despite everything he has been through in his short life Oscar's family say he has taken it all in his stride.
His mum Jessica Crook said: "Oscar is the most happy, funny, cheeky chappy. He is absolutely thriving in life and you honestly wouldn't think there was anything going on with him. We are beyond proud of him and he just makes everyone happy who is around him. He really is an inspiration."
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Immediately after Oscar was born Jessica said she could see something was wrong with him. "Looking back at scans when I was pregnant they showed that Oscar's head was measuring big and nothing was taken further. The doctors looked at him the first day he was born but discharged him without any scans or tests taken," she recalled.
"The midwives and health visitors that visited him didn't see any problem even though I queried it multiple times. The growth chart that every child has after they are born that monitors how they are growing showed that his head was measuring over the top centile but we were told that 'his head is big because you and Oscar's dad have big heads'."
But her fears were confirmed just weeks later when Oscar was diagnosed with sagittal craniosynostosis, where a baby's skull does not grow properly and their head becomes an unusual shape. He now requires an urgent operation to correct it.
However due to the cost of living crisis his heartbroken parents have been forced to launch an urgent appeal to help them cover the huge travel and accommodation expenses. Jessica added: "Due to the surgery being in Birmingham, we will have to make four to five-hour trips each way multiple times and the soaring cost of petrol certainly doesn't help. We will also have to pay for a hotel near the hospital for up to a week if the Ronald McDonald House is full plus the food while we're up there and anything we need to make Oscar as comfortable as possible.
"I'll also have to take up to a month off work which is more than likely going to be unpaid leave so paying our bills is going to be a struggle. Oscar's dad, Shaun, is self-employed so will only be able to take off the minimum of days as he isn't entitled to anything while off work.
"Any money left over will be donated to either the Ronald McDonald House or Birmingham Children's Hospital or split between both. Times are hard for us as a family with Oscar's operation coming up – stress and worry are eating us up. We really didn't want this to be an option but with a lot of thought we couldn't think of anything else we could do to raise the funds needed."
Jessica, from Pontarddulais, Swansea, said the deformation of Oscar's skull has already begun and surgery is needed to prevent any future complications. The operation, which is scheduled to take place on August 23, involves removing a strip of the skull to help increase the amount of room for the brain to grow, improve the skull's shape, and reduce the risk of the connective tissue closing too early again.
"This surgery can take up to seven hours and Oscar will have a scar from ear to ear. Recovery is going to be hard and intense," Jessica admitted.
"We are very nervous about Oscar's operation and the fact we have to go up to Birmingham, away from all the people we're close to, is going to be hard. We are lucky that my parents are able to come up for a couple of days.
"I really want more people to be aware of craniosynostosis as 99% of people I talk to about it have never heard of it before." To donate to their GoFundMe page please go here and for more information on sagittal craniosynostosis please go here.
She added: "We are very grateful that Oscar is able to have this surgery on the NHS the surgeon and the team up in Birmingham we have spoken to has been fantastic."
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