Little Alaw can't sit, crawl or walk but she's got something that melts everyone's hearts

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2 days ago

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From the moment she was born, Alaw Evans has been a "little fighter". When mum Ffion developed a rare pregnancy condition, a lack of oxygen left her with a catastrophic brain injury.
After the birth, on Valentine's Day, dad Barry was warned both his wife and daughter might not survive. Alaw was placed into neonatal intensive care and it was five days before Ffion was well enough to be wheeled to the unit to meet her.
Even when the pair were allowed home to Llanfairpwll, Anglesey, Alaw's battles were only just starting. When she was almost two-years-old, she was diagnosed with cerebral palsy, epilepsy and a muscle spasm condition called dystonia.
Since then Alaw, now aged four, has fought back, her progress charted in what Ffion calls 'inchstones' – the miniature version of milestones. 'Our inchstones are what we call those little moments that for us are everything,' said Ffion. 'Those teeny tiny steps where Alaw is doing something really well, something we never thought we would see.
'Alaw isn't able to sit up unaided, she doesn't crawl, she doesn't walk and she doesn't stand without the support of a frame – but she has the most contagious giggle ever!
'She loves going on the swings, being pampered and having her curls brushed, and she loves to go swimming with the physios – last time she was so relaxed she giggled non-stop in the pool and all the way home too. For us these things are all massive.' Join the North Wales Live Whatsapp community now
Getting to this stage has been tough. In late pregnancy Ffion developed a condition called HELLP syndrome – this stands for (Hemolysis, Elevated Liver enzymes and Low Platelets). Occurring in fewer than 1% of pregnancies, it's a life-threatening pregnancy complication usually considered a variant of preeclampsia.
'They were both fighting for their lives,' recalled Barry. 'We were being told to expect the worst. The obstetrician told us it can very often be fatal for both mum and baby, so we were extremely lucky.'
Being allowed to return home was a doubled-edged sword: as the Covid pandemic was still raging, the family began to feel increasingly isolated. Alaw was often unsettled, crying incessantly and making it difficult to leave the house.
With Barry needing to go to work, Ffion was up with Alaw every night. 'I was so exhausted during the day I couldn't look after her,' she recalled. 'So my mum had to come in and help. I was virtually nocturnal for those first three years and we just hit rock bottom.'
When Alaw was diagnosed with cerebral palsy, she spent six months in Liverpool's Alder Hey Hospital to manage her condition and to relieve her constant pain. It was at this point a paediatrician suggested the family consider a respite stay at the Tŷ Gobaith children's hospice near Conwy town.
From the moment the family arrived at the centre, in the spring sunshine, they were made to feel at ease. Ffion's first impression was just how beautiful the setting was. 'We went inside and everybody was making a fuss of Alaw and she was loving it,' she said.
'We were offered a cup of tea and a piece of banoffee pie and invited to sit down. Someone said, 'We'll take Alaw' - that was scary because we'd never left her with someone else as she is so medically complex. No one knew her like I knew her.
'The first time we left her overnight was massive for us but it felt like a safe place and I'm not just talking about the nurses, I'm talking about the housekeepers and the kitchen staff and how everybody knows everything that is going on there and how everyone is involved in Alaw's care like one big family.
"I think they are the only people in the world who really understand what being parents to a medically complex child is all about.
'For instance the social work team is amazing and point you in the right direction if you need something. I don't have the time to do nice things such as searching for accessible family holidays we can take Alaw on, but they did that and sent me the links.'
In recent weeks Alaw's face has featured on the cover of envelopes that have landed on 32,000 doormats. These contain information about Tŷ Gobaith's summer campaign, which in just a few short weeks has already raised more than £60,000.
Barry has played his part, abseilling down the Anglesey Column to raise money on behalf of Alaw, who he calls his "little fighter".
A new chapter has now opened for the family with the arrival of a baby boy, Caio. Continued help from the charity means Barry and Ffion are better able to focus their energies on their children.
She added: 'Without Tŷ Gobaith, life would be like it was before – we would be exhausted and at rock bottom, and that isn't a nice place to be. Respite is giving us that chance to have a breather.
'When Alaw is at Ty Gobaith we get to slow down and make sure that we don't reach burn out like we used to. That makes us better parents.' Sign up for the North Wales Live newsletter sent twice daily to your inbox
To support Alaw's campaign, and help local children with life-threatening conditions, there's more information on the Hope House website.
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