“Our inchstones are what we call those little moments that for us are everything,” explains 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, she doesn’t stand without the support of a frame but she has the most contagious giggle ever!

Alaw enjoying a swim.

“She loves going on the swings, being pampered and having her curls brushed, and she loves to go swimming with the Tŷ Gobaith 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.”

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From The Beginning

It’s a huge leap forward from when Alaw was born on Valentine’s Day four years ago. Ffion developed a very rare pregnancy condition called HELLP syndrome which resulted in Alaw suffering a catastrophic brain injury due to a lack of oxygen.

Both Alaw and Ffion were so poorly that it was five days before they were able to meet each other for the first time.

“They were both fighting for their lives and we were being told to expect the worst,” recalls Barry. “But Alaw was a little fighter, and after five days Ffion was able to have her bed wheeled to Neonatal Intensive Care to meet her too. The obstetrician told us the chance of having HELLP syndrome is extremely rare and very often it can be fatal for both mum and baby so we were extremely lucky.”

Home Time

The family were eventually allowed home, but it was in the middle of the Covid pandemic and they began to feel increasingly isolated. Alaw was very unsettled and cried all day and all night without stopping, which made it virtually impossible to leave the house.

 “Barry was needing to go to work so I was up with Alaw all through the night, but then I was so exhausted during the day I couldn’t look after her so my mum had to come in and help. I was virtually nocturnal for those first three years and we just hit rock bottom,” says Ffion.

When she was almost two years old Alaw was diagnosed with Cerebral Palsy, Epilepsy and a muscle spasm condition called Dystonia. After six months in Alder Hey Hospital to manage her condition and relieve her constant pain, a paediatrician suggested that the family consider a respite stay at Tŷ Gobaith.

Welcome To Tŷ Gobaith

Alaw is all smiles with Sara.

“We went to visit in springtime last year and I remember stepping outside in the car park and just feeling completely overwhelmed by how beautiful the setting was. We went inside and everybody was making a fuss of Alaw and she was loving it,” remembers Ffion.

“We were offered a cup of tea and a piece of banoffee pie and invited to sit down. Someone said, ‘We’ll take Alaw’ and that was scary because we’d never left her with someone else because she is so medically complex. No one knew her like I knew her.

One Big Family

“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.

“And Louise the pharmacy technician sourced me a tablet to manage all of Alaw’s medication when we came out of hospital and spent the evening programming it; Sam our key nurse is always checking that we are looking after ourselves as well as Alaw; and Angharad, the head of care, is my go-to person for help and advice because of all her knowledge and experience. It is also so important to me to have someone I can speak to in Welsh about Alaw’s care because it helps me to get my thoughts in order.

Alaw enjoying her respite stay.

“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 Tŷ 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.”

Barry agrees: “We are so excited about this next chapter in our lives where we can just be parents to Alaw and our baby Caio, and with the help of Tŷ Gobaith that is happening more and more often. We can look to the future and can look forward to making plans because we know we have Tŷ Gobaith to help and Alaw is happy there.”

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Published on April 22nd 2025