The family discovered Juno’s condition when she got to 10 months old and still could not sit up.
“We found out through whole genome sequence testing, so that’s when they take a blood sample and they look at all of your genetic material.
“They looked at her small size, development delay, learning difficulties, things like that. And then at the same time they took blood from myself and my husband to compare.
“They found through that I had a change and my husband had the change in the same area. So then that’s when they discovered that Juno had inherited both copies.”
The condition is caused by a mutation in the genes. There is only one other known case in Europe, in France, but the families have been unable to make contact.
“We’ve recently signed up to a big database so that if anyone else gets diagnosed, they’ll get our details,” said Ms Davies.
“I made a Facebook group and I’m the only member, but if anyone else does get diagnosed and then they search for it, at least they’ll find me.”
Caring for Juno required Ms Davies to give up her career as a building surveyor, where she specialised in designing home adaptations for families with disabled children.
“I spent most of my career in marketing, but then I had a bit of a change and I decided to go back to uni.
“It’s quite ironic now because we are actually in the process of applying to do that to our own house.”
Juno struggles to walk and needs to be carried up and downstairs and help getting in out of the bath.
She has a walking frame and has received specialist physiotherapy.
Ms Davies, her husband Lance Hodgson and Juno recently appeared on BBC show The Travelling Auctioneers, selling unwanted collectibles and heirlooms, to pay for her treatment.
“I didn’t go back to work and I just assumed I would continue my career, but she can’t do a full day of nursery.
“She just gets too tired. Her condition means she needs quite a lot of sleep, so she’s only doing mornings, which also limits my ability to be able to work office hours.”