Twm’s story
Meet 10-year-old Twm from Pontarddulais.Twm has haemophilia, a rare condition which means his blood doesn’t clot properly. Even a small injury can lead to serious bleeding, and in Twm’s case, this has had life-changing consequences.
Twm had only been home for two short days when mum, Carys, noticed something wasn’t right with her new baby. She said: “He became very lethargic and wasn’t taking feeds so the midwife came and told us to take him straight to the local hospital.”
At six days old, Twm suffered a bleed on the brain. He was transferred to the Noah’s Ark Children’s Hospital for Wales, where he spent six weeks as an inpatient on the Paediatric Critical Care Unit (PCCU).
Carys continues: “Twm was really poorly and there was more than one occasion when I was told that he wouldn’t make it. It was the worst possible scenario.”
But against all odds, Twm did pull through and today he’s described by his mum as “an extremely happy little boy.” He has cerebral palsy and epilepsy, uses a wheelchair, and experiences daily seizures, but that doesn’t stop him.
“He’s a lovely chap – a real people person. He takes everything in his stride and he’s always happy. He really does bring out the best in people.” Carys said.
In April last year, Twm became seriously unwell and after three days in his local hospital with no improvement, he was transferred to the Noah’s Ark Children’s Hospital for Wales. Tests revealed that Twm had experienced another brain bleed. He was having constant seizures, and had to be intubated and sedated for seven days to stop the seizure activity and to allow his body to rest. Some days after waking up he again entered a state of status epelepticus from being so weak and exhausted and spent more days on the high dependancy ward.When Twm woke up, he was incredibly weak and unable to hold up his head. But with the support of the occupational therapy and physiotherapy teams, he slowly began to recover. He was provided with a specialist wheelchair and later moved to Island Ward for neuro-rehabilitation.
After two long months in hospital, Twm was finally discharged on the 3rd of June.
Twm’s hospital care was supported both by the clinical care he receives, and the ‘over and above’ services that make hospital feel less daunting. Due to his complex needs, Twm and his eight-year-old sister, Buddug, have spent a lot of time at Noah’s Ark and Carys says that the therapeutic and specialised play team, particularly Paige and Sian, have made a huge difference.“They’re amazing with Twm, and such a support to Buddug too. They make hospital a fun place to be.”
From Easter eggs and teddy bears to visits from superheroes, special moments have helped the family through the hardest times. One of Twm’s favourites? A visit from Daisy the therapy dog organised by the Noah’s Ark Charity’s sparkle team.
Carys said: “They loved that because we really miss our dogs at home when we’re in hospital. Twm also loves music so he loved his music therapy sessions with Becca! Sensory learning with his hospital teacher, Isabel, was fantastic too.”
By way of saying thank you for the care her family has received, Twm’s grandmother, Ann, has been fundraising for the charity in her home town, Swansea last autumn, she hosted an afternoon tea that raised an incredible £2,000 and now she’s organising a community Zumbathon which will be perfect for music loving Twm.
If you’d like to support Twm and many others like him by getting involved in the zumbathon, click here: https://facebook.com/events/s/zumbathon/937607058640958/
