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Edinburgh Live
Edinburgh Live
National
Sian Traynor

Edinburgh mum desperate to see son walk after life-threatening infection

An Edinburgh family have shared their hopes of finally getting to see their son walk after he was diagnosed with cerebral palsy as a baby.

Veronica Koh, 29, and her husband Steven were experienced a nightmare ordeal during what should have been the happiest time of their lives as they welcomed their first child, Freddie.

Previously diagnosed with congenital heart disease, Veronica had been on a close watch during her pregnancy, but had gone into labour and delivered her son when he was just 24 weeks old.

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Spending six months in hospital, the family told Edinburgh Live how they were then hit with another huge blow when Freddie caught a NEC infection at the hospital, causing severe damage on his brain.

The damage led to a diagnosis of cerebral palsy, with Freddie's parents told his arms and legs may never work and that he may need a wheelchair for life.

Speaking about their experience, Veronica said: "I have congenital heart disease so my pregnancy was never going to be easy, they thought I would have a C-section at 32 weeks but my waters broke at week 21 and I was in the hospital for three weeks.

"It was pretty scary and then when Freddie was here and a few months later we were at the Simpsons unit and he caught an infection called NEC, it affected almost all the babies on the ward, I think around five others got it and a few of them actually died, so it was really scary.

"At one point they said to us he might not last the night, but luckily he pulled through, however the damage was a bit too much for him and it affected his brain. They only picked up on it on a routine head scan and saw that a chunk of the back of his brain had almost turned into mush, it just wasn't there, and then he got his diagnosis of cerebral palsy and other things.

"Since then it has been difficult, we didn't know what to expect and then covid hit so we never saw anyone until September 2020. We have felt a bit like he's been let down a bit, the NHS is fab but they don't have enough time and it's really hard so we have had to pay for private sessions to keep on top of things, we didn't want him to miss the boat and try and do everything we can for him."

Now three-years-old, the family have seen Freddie go through multiple therapies and treatments in the hope that they will allow him to gain more movement as he grows.

However, with NHS facilities and time limited, Veronica shared that they have already paid out thousands for private sessions to give Freddie the best chance.

Recently starting an eight week course at a Cerebral Palsy clinic in Glasgow, the block of appointments alone comes with a cost of £5,000, with any additional therapies also proving expensive.

Veronica added: "Age three to five is the best time of him to learn and his brain is more inclined to pick up more so we're trying to get the funds to keep moving forward.

"Freddie doesn't do anything himself right now, he gets really stiff on his left side so changing and bathing him can be difficult, it's the same with day to day things as well.

"We've started Bobath therapy a few weeks ago and they've already seen a difference in him, they're really hands on and he seems to be picking it up a lot. It definitely helps us because we don't know what to do.

In the hope of funding Freddie's treatment for the next year, the family have launched a GoFundMe page, with an ideal target of £10,000.

Determined to see their son be able to walk in the coming years, Freddie's dad Steven added: "The £10,000 is just a goal for this year alone, we wanted to start off small as in the grand scheme of things it will only cover two blocks.

"It's a massive help and the more sessions he can get is great. I honestly believe that he will walk, I've said it since the beginning, he's come on so much since he was a baby. He can sit up on his own now, and since the hydrotherapy he can stand on his feet, he just can't move his legs yet. So that is the end goal so between now and starting school is the most important time."

You can donate to Freddie's fundraiser here.

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