Rhys' Story

“As soon as we get there we are completely made to feel welcome. I don’t have to think about cooking or cleaning. On our last visit we went to soft play every day, five times a day.
Born five weeks early baby Rhys left medical staff foxed when he terrifyingly stopped breathing several times before he was diagnosed with a rare genetic condition.

Mum Naomi said: “He stopped breathing I don’t know how many times. They said: `he’s not going to make it. We don’t know what’s wrong with this baby.’

Eventually a doctor diagnosed Rhys with DiGeorges, the result of a missing chromosome which can cause up to 200 different conditions including heart defects, learning difficulties and a cleft palate.

Rhys is now hooked up to a ventilator all the time to help him breathe and has a tracheostomy, but despite all his difficulties and an unknown future Naomi remains positive:

“I know he’s got a life-limited diagnosis and we know children that have got a common cold and haven’t been here the next day but I am very positive with Rhys, we’ve got him into a mainstream nursery, I feel let’s make the best of a challenging situation.”

The family, who also include older daughter Immi, were put in touch with the Demelza Community team and now have respite care at home allowing Naomi to go riding:

“I look forward to that time. It gets me through some very challenging days.”

They also enjoy spending time at Demelza Kent:

“As soon as we get there we are completely made to feel welcome. I don’t have to think about cooking or cleaning. On our last visit we went to soft play every day, five times a day.

“It means I can get a bit of a break.”

“We’ve made friends with people who get it. It’s nice to have people on the same wavelength.”

Naomi adds: “That time at Demelza helps build memories. It gives us time to be a family and time to look forward to.”