In 2017, I couldn’t have been happier to discover I was expecting twins. But at my 20-week pregnancy scan, I was given the unexpected and devastating news that one of my babies, Orla, had a life-threatening condition.

Orla has Hydrocephalus, which is a build-up of fluid on the brain. I sobbed when I was told she was unlikely to survive past childhood. It was too much for me to take in knowing that one day Luca would be without his sister when I had two beautiful babies in my arms.

She is now four and it really is miraculous that she is still here. The Doctor’s told me they didn’t think she would have a long life and when she was born, it broke my heart to see nurses making memory boxes because they didn’t expect her to live.

No matter how small, your gift today could make the world of difference to families like ours.

When I look at my beautiful Orla, my heart melts with pride. She is a very determined and amazing little girl. She smiles so much and is always making everyone laugh with her cheeky character. She loves to sing songs and we often hear her singing Hungry Eyes, which is her favourite. It always brings a smile to my face, even on the darkest of days.

But her condition is exhausting. Orla suffers from seizures, which is a constant worry. They are terrifying and getting more frequent and I don’t know when they are going to happen.

Most parents kiss their children goodnight until the morning, but I am constantly monitoring my little girl living in fear that she might not make it through the night.

 

It is times like this when Rainbows becomes our world. When we stay at Rainbows, it is almost like coming to a sanctuary. When it gets a bit too much, I know there are always people there who I can turn to.

Orla’s mummy

At Rainbows we know our little family is not alone and they help us make the most of the precious time we have together. The support all three of us get there is invaluable. I also find support talking to other ‘Rainbows mums’ who know exactly what I am going through.

The twins thrive at Rainbows. It is incredible to watch my baby girl be herself and share precious moments with her brother. I want to capture all of those precious moments and bottle them up for the days when I know they will no longer happen.

Orla absolutely loves the Multisensory Room the most, and loves all of the lights. She also enjoys being creative in the Music Room and the Arts and Crafts Room. Every hour that Orla is looked after by a specialised Care Team Member costs Rainbows £25. Every hour that I am supported by a member of the Family Support Team costs £40.

You can help support families, by donating today

It pains me to think about how uncertain the future is for Orla. Doctors have warned me that Orla is unlikely to get into her teenage years and when I really think about it, it is too hard. I get upset thinking of all of the things she won’t get to experience so for now, I take every day as a blessing.

Rainbows has given us so many special moments and it is because of your donations that these moments can be created.

I know that time with Orla is so precious and she won’t be around forever, but I know the memories that you have helped to create, will be. Nothing can take those from us.

Orla’s mummy