Their newborn son, Cai spent the first weeks of his life back and forth to hospital and stayed there permanently for a year after suffering from collapsed lungs and a cardiac arrest which caused brain injuries. Eventually, after four nerve wracking years under constant medical care, Cai was diagnosed with VICI Syndrome – a condition so rare that only about nineteen children in the world are known to have it.
“Most children affected by the syndrome die very young so at eight, Cai is doing really well”, explained Micaela.
We can’t treat his condition but we can just manage the symptoms. It was a relief when we got his diagnosis because I had always blamed myself for his illness. But now we know he has a genetic syndrome, I’ve got the closure that I needed.”
“Even though Cai has challenging and complex care needs, he’s currently stable and defying all doctors’ expectations. Last year Cai was diagnosed with neurological sleep apneas and now receives help sleeping from a machine which assists him to breathe at night. It’s really improved his quality of life. He is extremely intelligent and can communicate physically, saying yes or no with his hands. He loves the music sessions at the hospice but he generally just likes to chill out! He’s such a beautiful little boy, with bright blonde hair, blue eyes and the longest eyelashes you’ve ever seen.”
“Cai loves Tŷ Hafan and always gets excited when I tell him he is going. The nurses, carers and every single member of staff are incredible and he loves them all. His five-year-old brother Harrison absolutely loves it too and asks to go there all the time. He literally thinks it’s the best place in the world”.