The family spent the festive period in and out of hospital, with Kai undergoing gruelling tests to find out why he was in distress.
“He screamed day and night – I’ll never forget the sound of it”, says mum Leanne. “Our worst-case scenario had been cerebral palsy – nothing prepares you for this.
“We left the hospital with a screaming, non-feeding baby, telling only close family the diagnosis – we didn’t want to ruin Christmas for everyone.”
The diagnosis of severe multicystic encephalomalacia just five days before Christmas was devastating for Leanne and Sara, who were blessed with Kai following two-and-a-half years of IVF. Demelza stepped in to support the couple, but it wasn’t long before they faced another hurdle they could never have predicted: COVID-19 and the subsequent 12-week lockdown. The Demelza care team managed to visit the family once at their Greenwich home before restrictions kicked in and services moved online.
The gloomy months in isolation were made brighter for little Kai, thanks to virtual music therapy sessions and the family had fun at a virtual afternoon cream tea and Halloween party. They also enjoyed swimming in the hydrotherapy pool at Demelza’s Kent hospice and Leanne and Kai made the most of a respite stay at its hospice in South East London.
Leanne, said: “Lockdown has been up and down. Sara had to go back to work and I was really anxious. I could never have imagined that our first day out as a family would have been at a hospice but it was a big day for us and we loved it.
“Kai also loved his respite - he’s such a flirt with the nurses - and he slept so well. It’s such a great place and it helped me to have fun with Kai.”
And after the most challenging 12 months, Leanne and Sara are now looking forward to making it the best possible Christmas for their son, thanks to special festive wishes granted by Demelza.
Thanks to generous supporters who donate to the charity’s Christmas appeal, Demelza Elves will be delivering a special present to Kai and hundreds of other children like him. What’s more, children will also receive a personalised video message from Santa and be invited to lots of festive-themed online therapy sessions throughout December.
And Leanne and Sara, have their own plans in place to make the most of the precious time they have together with their ‘cheeky’ one-year-old.
“We’re short on space in the flat”, says Leanne. “But we’ll cover everything with lights and decorate where we can. This virus isn’t going away but we don’t know how long we have Kai for. He might defeat the odds but we can’t lose this precious time – we need to make memories as a family.”