Family pleads for help to be with sick son in hospital

IN NEED OF HELPING HAND: The Smedley family - John, William, Jo and Phoenix - are seeking help to be in Brisbane with baby William while he has surgery and rehabilitation for a rare cranial condition.
IN NEED OF HELPING HAND: The Smedley family - John, William, Jo and Phoenix - are seeking help to be in Brisbane with baby William while he has surgery and rehabilitation for a rare cranial condition. Sophie Lester

A WARWICK family is asking for help to save the life of their 10-month-old son.

William Smedley has metopic synostosis - a condition in which a baby's skull fuses too early, causing a noticeable ridge to form on the child's head.

Though some children with the condition don't require treatment, William's mum Jo said the infant was booked in for a surgical consult in Brisbane in less than two weeks.

"William had an operation at three months because he had been severely tongue tied and lip tied," Mrs Smedley said.

"With his condition, it essentially means his brain will grow bigger but his skull won't grow with it because it has fused too early.

"The condition can cause brain damage, behavioural issues as well as blindness and deafness in some cases.

"We've been monitoring his milestones carefully with appointments at the childhood health centre on Percy St.

"At one stage he was sort of saying mum and dad but now he's gone back to a babble.

"We went to (one) Hospital for an x-ray to have it confirmed and the paediatrician there said it was nothing to worry about and would be reviewed in six months.

"We wanted to get a second opinion so we went to the Lady Cilento Children's Hospital on Monday and we were given triage right away and have been scheduled for a surgical consult on March 17."

Mrs Smedley and husband John fear the surgery and possible side effects will put too much pressure on their family, already struggling with frequent visits to hospital.

William's older brother Ryder, 5, and sister Phoenix, 4, both have autism.

Mrs Smedley receives a disability pension, while Mr Smedley gave up work to help with the kids at home.

"What we are hoping to do is be able to pay out our lease so we can look at moving to accommodation closer to the hospital," Mr Smedley said.

"With the surgery looking very likely at this stage, we want to be close to William because he could be in the hospital for up to three weeks.

"If the surgery goes ahead, he could be going back for check-ups and physiotherapy appointments several times a week.

"It's stressful to be driving back and forth to Brisbane all the time so we'd be looking at accommodation closer to the hospital."

"We had to have emergency repairs to our car on Monday because the radiator failed on our way into Brisbane."

The couple has set up a gofundme page to help them move to Brisbane and cover some of the extra costs.

But they said it hadn't been easy asking for help.

"We had a lot of nasty comments from people saying it's a scam. We almost pulled it down because of the negativity," Mrs Smedley said.

"I had one lady in the shops ask what was wrong with his head and I just burst out crying, I couldn't hold it in any more.

"We know Medicare will cover a lot but the cranial helmet that William would have to wear after surgery isn't fully covered.

"It's not easy for us to ask for help - we've tried our best to help others but we don't have any family support here in Warwick.

"At least if we were in Brisbane we could have one of John's family members help pick up Ryder from school and things like that.

"We just want to help our son have a good quality of life, and share our story because we don't want other families to go through this."

To make a donation, go online to williams-journey.

Topics:  editors picks warwick community warwick people

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