Emily Kitson has faced more challenges than most in her short life, but the “happiest little girl you could meet” takes it all in her stride. From being diagnosed with the extremely rare Rett Syndrome at two-years-old to a “game changing” introduction to Bluebell Wood, mum Amy tells their story: 

“When Emily was born there were no complications. There was absolutely nothing to worry about as far as we were concerned.

“As she grew older, she was a little bit behind with her crawling and walking, and she behaved in ways that made us think that something wasn’t quite right.”

Doctors initially suspected Emily had hypermobility or autism, but all the evidence began to point to a condition called Rett Syndrome, which mainly affects girls.

At around two-years-old, Emily started having outbursts, which the family believe was down to frustration at losing skills she’d acquired. A genetic blood test then confirmed their suspicions.

“It was a massive shock,” said Amy.

“But it was good to find out for definite what it actually was, as there are so many undiagnosed conditions out there.”

Since being diagnosed, Emily has lost the ability to speak and now needs round the clock care.

“Emily is stable but Rett Syndrome is degenerative so we’re on the lookout all the time for any changes in her condition.

“In the future she may have breathing difficulties and all sorts of other complications, but I try not to think about that.”

When the family, who are originally from Hertfordshire, were referred to Bluebell Wood, it was like a weight had been lifted from their shoulders.

“Bluebell Wood is amazing – it feels like an absolute game changer for us,” said Amy.

“It’s like our northern family. You have that complete trust and feel happy and safe, in the same way you do with your family.

“It’s been great for Emily’s sisters too – Charlotte and Chloe love being at Bluebell Wood too because they can get involved in the arts and crafts, the music and everything else."

The family did not know when to expect on their first visit to the hospice, but any fears they had quickly disappeared.

“It took us a while to relax at first - but as you go on you realise how lovely and happy it is. It’s the complete opposite of how I imagined it would be.

“Also, we were not used to someone else looking after Emily. That was difficult to get used to at first but once we did, it was amazing."

Emily is very much a people person, and she loves being centre of attention when she visits Bluebell Wood.

“Emily’s honestly the happiest little girl you’d meet,” said Amy.

“She loves to socialise and be amongst people – and she’s a real cheeky one.

“She has a great sense of humour too and likes to go on the wind-up sometimes, and she loves it when she gets a reaction!”