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Liam’s story

Liam developed NF in his arm when he was only 2 years old. Liam's mother tells their story.
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Hi I’m Nicola Vaile, mum to Ryan who’s six and Liam who’s 2 and married to Steve and living in South Wales. This story is about our son Liam. It all started on September 9th 2005, Liam was playing happily in the garden when he let out the most piercing scream. After picking him up Liam was complaining of his left arm hurting I looked for grazes, cuts and bites but couldn’t find any, only a slight swelling around the wrist of his left arm.

After 35 minutes of Liam crying and things just not feeling right we took him to our local hospital to the A&E department. After numerous x-rays and no breakages found, we were sent home, to return the next morning for more x-rays.

During the night Liam had a violent temperature and his arm was swelling and turning red at a rapid rate. In the early hours of the morning of the 10th September we returned back to the A&E dept, more x-rays were done showing up still no breakages by this time Liam had very bad diahorrea and vomiting.

By 10am they had admitted Liam onto the ward saying they thought he might have what they called ‘compartment syndrome.’ During just a few hours Liam became semi conscious only waking and asking for a drink which he was drinking bottle after bottle and the arm was extremely swollen and turning like a purplish colour.

At this point Liam was put onto an intravenous drip as he was becoming dehydrated. Later in the afternoon we were told a specialist team from the Heath Hospital in Cardiff were on there way to transfer Liam.

Within four hours of them arriving we were told Liam was now on full life support and fully sedated and that all his vital organs were failing. We were told at this point that he was probably not going to get through this and there was no more room for Liam to get any sicker.

We arrived at PICU in Cardiff at 1am on Sunday 11th, by 4am we were told they were taking Liam to theatre and making a cut from his wrist to just above the elbow and to cut away some tissues.

They were then sent to the microbiologist for analysing and by the afternoon, Liam was deteriorating very fast. His kidneys had failed so he was put on dialysis, he was being given over 18 drugs and the ventilator was breathing for him.

Toxic shock and septicaemia had set in too. By 7pm that evening Liam was being rushed back to theatre and we were told Liam had Necrotising Fasciitis. We signed the forms for them to amputate Liam’s left arm above his elbow we had no choice. We we told Liam might not even make the op.

The next 3 weeks became a blur just praying that our little boy would be strong enough to pull through this horrific journey and he did, but with complications. Liam had severe muscle spasticity so was transferred to Morriston Hospital in Swansea so that they could do a closure on his wound, as for 3 weeks, it had been left with just a loose flap of skin, so that every day they could take down this dressing to make sure that all was ok.

Liam had another two operations whilst in Morriston, one to do the closure and the second to put botox injections into Liam’s legs and right arm and to put them into plaster cast splints so that the physios could start to do Liam’s intensive physio which would be ten days after the botox injections.

After nearly five weeks in 3 different hospitals we were allowed to bring Liam home unable to walk or talk and not even communicating with anyone we knew that this was going to be another tough time for Liam. By the middle of November Liam had started walking and was talking again (well you can just imagine how this felt to us as a family) .

By the end of December we started to notice a deterioration in Liam’s right hand side of his body, he now swings his right leg out and his foot is turned inwards.

At out recent appointment Liam has been diagnosed with dystonia and cerebral palsy due to Liam having to be resuscitated during his illness with Necrotising Fasciitis.

It’s now 23rd January 2006 and Liam is unable to do lots of things that he used to do but when we wake every morning to his happy smiling face and cheerful personality is such a great reward to have him here with us, after being through such an horrific journey he has been on in the last four months.

We will keep you all posted as to Liams progress and the many hospital appointments that we are attending.

Love and best wishes to you all,

Nicola Vaile x

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