Isla's past year | Julia's House

In last year’s Big Give Christmas Campaign, we shared with you the story of little Isla and her family. Isla was born very premature at just 24 weeks and was so tiny she fitted into the palm of her dad’s hand. As a result, Isla has developed lung disease, so she always needs to be attached to oxygen, and she has brain damage.  

Now aged four, Isla is a determined little character and loves playing with her five-year-old sister Darcey and her nurses and carers at Julia’s House. But she's still very vulnerable, which means her parents Georgia and James never know how she’ll be from one day to the next.  

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Mum, Georgia shares an update on the family’s journey so far this year and the role Julia’s House has played in supporting them.    

Support over a scary time 

“Earlier this year, we took Isla to the riding for the disabled centre near us. She’s built up the strength to ride on a pony, which she absolutely loves. She seemed great, but then the next day her temperature massively spiked and we couldn't get it down.  

“By the weekend, she was in intensive care and needed to be on breathing support. We were in hospital for about four weeks in total because Isla ended up getting three nasty viruses, one after the other. We even celebrated Isla’s fourth birthday in hospital. 

“It was really scary for all of us when Isla was in intensive care, and Darcey understandably got very wobbly. She didn’t want to go into school and was so worried. I rang our Julia’s House Sibling Worker, Tracey, and explained what was going on to see if she could help, and she said, ‘no problem’ and came straight over that evening. She spent time with Darcey and gave her a ‘worry monster’ to keep hold of and take into school. It was just what Darcey needed.  

“Now that Darcey has her own Sibling Worker, that has been a massive help for her. She absolutely loves it when Tracey visits because that’s her friend coming over! Isla and I get out of the way so they can play together on their own. They often do crafts and trampolining together – poor Tracey is never allowed off the trampoline! It's so good for Darcey to have a special person to talk to, who is there just for her to have fun and play.” 

A special treat, with help from Julia’s House 

“Isla’s well at the moment – we've actually just got back from Disneyland Paris! We kept it a secret from the girls until we were in France because we didn’t know if Isla would get poorly and then we’d have a very disappointed little Darcey on our hands.  

“The trip wouldn’t have been possible without the help of our Julia’s House Family Support Worker, Emma. She suggested that we applied for special funding and helped us complete the application – luckily we were accepted. It meant we could go for five days, which we’d never have been able to afford ourselves.  

“The girls had so much fun and we made lots of special family memories. The highlight of the trip for Isla was getting to meet the Little Mermaid and Darcey loved dancing along with the parade.” 

Hopes for the future 

“Our next big milestone is Isla starting school. We didn’t think we’d get to this stage to be honest, and I won’t believe it until she’s there. As Isla’s built up her strength, she’s started to use her walker a lot more and she’s also learning simple sign language too. She can sign her name with Makaton now!  

“She already has a communication board that she uses with her nurses and carers at Julia’s House and with other friends and family too. 

“We're hopeful that by the time Isla starts school, she’ll be able to use her whizzybug wheelchair and walker more and she’ll be able to communicate better, so it gives her that freedom to get to where she wants to be and tell people what she wants.” 

Ongoing care from Julia’s House 

“It's such a help for us all to have regular care and support from Julia’s House – whether that’s Isla coming in for sessions at the hospice, Darcey having her Sibling Support at our home, or all of us socialising with other parents and families at Julia’s House events. 

“For a few hours – while Isla’s with Julia’s House – I get to live a non-carers life. It kind of re-sets you. You take a break, get some things sorted, and then you’re ready to start again.” 

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