Meet Elodie

At five days old, Elodie was diagnosed with a rare genetic disorder, Edwards’ Syndrome. Now 18 months old she is defying the odds: most babies with the same diagnosis do not live past their first birthday. Her parents, Jess and James, care for her round the clock, taking it in turns to work and sleep.

Rainbow Trust Family Support Worker Laura has become a vital source of support for the family, providing practical and emotional support so her parents can have a break from Elodie’s hospital bedside, work, sleep and cope everyday. Laura has a very special bond with Elodie.

Elodie also has a hole in her heart, so if she gets too upset her oxygen levels drop rapidly so they have to keep her calm.

Elodie’s very low muscle tone means she cannot hold objects or entertain herself, she struggles to sleep, often waking every hour. Her parents are permanently exhausted, juggling Elodie’s illness with wanting to cherish every moment they have together.

Family Support Worker Laura began supporting them six months after Elodie was born. She has become a lifeline.

When Jess and Elodie were in hospital for five weeks earlier this year, Laura enabled them to have a much-needed respite by sitting with Elodie so they could leave her bedside.

Elodie's mum, Jess said:

“Knowing Rainbow Trust Family Support Worker Laura has got the experience with so many other families means we don’t feel so isolated.

“Laura has always come to the hospital during Elodie’s stays there which was a huge help because we didn’t want to leave Elodie in hospital on her own. We hadn’t left her before, one of us was there 24 hours a day for three weeks and Laura was one of the only people we left her with. That was a relief to know that we have this extra trusted family member almost.

“We have probably had no more than an hour’s sleep at a time since she was born, apart from when it’s our turn to work the next day."

“During winter we have to keep away from everybody which is pretty depressing. When we were in hospital for five weeks it was really scary and exhausting.

“It’s hard enough just to eat some food or make a coffee. When Laura’s here I always end up with a huge to do list and I can actually get some things ticked off on those days.

"The main thing I always want to do is have a shower because that always seems to just get pushed further and further down the pile because night times are disastrous."

“It’s constant trouble shooting. She doesn’t seem to need as much sleep as other babies her size or age and she wants lots of interaction and attention. She can’t hold her own bottle and because she is the size of a five month old she still has a bottle every couple of hours.