Emily-Rose's story

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Meet Emily-Rose and her family

Kayleigh and Andrew are parents to nine-year-old Noah and Skylar, seven-year-old Alfie, four-year-old Thomas, one-and-a-half-year-old Oliver, and one-year-old Emily-Rose.

Born prematurely at 24 weeks, Emily-Rose had a complicated birth. She had to be resuscitated twice and suffered bleeding on both sides of her brain which resulted in brain damage. She also has diabetes insipidus, chronic lung disease, cerebral palsy, and suffered a severe injury to her arm, called an extravasation injury. Emily also has a rare medical condition called hemihypertrophy.

Kayleigh explained:

‘From the moment when she was born, we were told her journey wouldn’t be easy and to prepare for the worst. So, we knew from day one Emily was going to have a tough time. We didn’t have a typical neonatal journey’.

Emily remained in hospital for 187 days after she was born, being transferred to three different hospitals while she received treatment for her conditions as well as undergoing three major surgeries – one of which, Kayleigh and Andrew had to sign a consent form saying that Emily may lose her arm.

‘She had many major setbacks in her journey, she ended up on a ventilator many times – she was really really poorly. I'm still not quite sure I've had time to process everything even now, we’re coming up a year now, and it’s still a crazy journey.’

Although Emily-Rose is now back at home with her family, she still has many hospital appointments to attend and treatments to undergo. Kayleigh and Andrew have around 21 consultants and specialists for Emily-Rose. Despite the ongoing challenges that the family face with Emily’s health, Kayleigh explained the relief the family felt when she was finally able to come home.

‘We were just all so elated to be together because we had all spent so much time apart. We’ve missed so much family time, my partner had missed our son's first birthday, we didn’t get Easter together or time in the summer holidays. Our second youngest son, Oliver, was just 9 months old when Emily was born, so it was really tough to be away from him as well. By the time we got to be together again as a family, we were just all so happy.’

Daily life has completely changed for Kayleigh and her family since Emily has come home, and it’s taken some time for them all to adjust:

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‘It has been difficult to adjust sometimes, now we come home to all the different machines – our living room looks like a hospital! Emily has a lot going on, and our kids are often subjected to things that they really shouldn’t be at their age. Since having her home, the kids understand machines they shouldn’t understand. It’s been very difficult.’

Kayleigh, Mum to Emily-Rose

Kayleigh also described how isolating it can be having a seriously ill child, and how this has had an impact on her own mental health.

‘We have friends and family as most do, but we can’t just make plans the way we used to. We can’t see family and friends as much as we would like to anymore.'
‘It can be mentally draining. We’re constantly to and from the hospital. Lots of her conditions are so rare that nobody really knows much about them. Because she looks different to other children, it gets a bit frightening taking her out and having people stare and ask questions, I just don’t know how to answer, and that can be hard too.’

The past year has also been hard on Kayleigh and Andrew’s other children. However, Kayleigh says they have adapted quickly, and really love their baby sister.

‘Two of my kids are autistic, so they understand that their sister is different from them, and they understand that because they are different themselves. They’re starting to understand that she can’t do the same things they can, or she can’t play the way they play. But they’ve learnt so quickly and they’re so happy and loving. They are all braver than most’.

The family were referred to Rainbow Trust in September 2023, and have been receiving support from Family Support Worker Natalie ever since. Natalie takes the children out to the cinema or for trips, and provides transport to and from appointments for Kayleigh, as well as providing emotional support.

Kayleigh says:

‘Natalie is just the best. She takes my older boys out to the cinema or takes them out after school. She also takes me to many, many appointments. She just makes me feel like I’ve got a friend who understands. I can’t sing her praises enough; she is just such a wonderful woman.’
Kayleigh quote image

‘The kids love her as well and they’re all so comfortable around her. She is just wonderful. She’s just what my family needed. I know I could call her if I’m upset, and she’ll always listen if she can. Sometimes all I want is cup a of tea and a chat. Natalie is able to give me that’

Kayleigh, Mum to Emily-Rose

The transport to Emily’s appointments makes a huge difference for the family as Kayleigh can’t drive, so Andrew would often have to do most of the driving to and from the hospital. But having Natalie means Kayleigh can attend these appointments, while Andrew can spend quality time with the other kids at home.

‘Andrew was always driving because I don’t, so he was always the one doing all the hospital appointments. But now he's got more opportunity to sit at home with the children and be a dad.’

Kayleigh explains it is also Natalie’s positivity that makes such an impact on the family’s life:

‘Natalie just makes everything so positive. She sees the positive in everything, and this makes the kids happy. It’s stressful having a seriously ill child, but having Natalie makes it easier on both myself and Andrew.’
‘Anything that I need, she’s there.’
‘Rainbow Trust Family Support Workers are just so friendly, they’re always up for a laugh. They show me that there is always something to smile about. They find the positives when you only able to see the negatives. They become family. I’d be lost without Natalie.’

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Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone. We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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