Rhys's story

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.

Rhys 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 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. I don’t have to say to Immi `wait a minute’ because I am doing something for Rhys. Everyone is lovely. 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.” 

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