Erinne

Last summer, our daughter, Erinne, died from a highly aggressive and incurable brain tumour. She was just seven years old.

When we were given the devastating news, we knew we wouldn’t have Erinne for long. To be faced with losing your child is inconceivable. To do it alone is unimaginable.

We couldn’t have coped without Rainbows when Erinne was with us, when she passed away and to this day. Rainbows was with us for every stage of Erinne’s journey and that was so important for us all.

Erinne loved being at Rainbows. She loved her sensory baths, drinking lots of chocolate milk and even being able to take our own dog, Megan, in for a visit.

Rainbows was her happy place, even in her darkest days. A place where she didn’t feel different.

For us Rainbows was more than the building, it was everything. At home, we had visits from the complementary therapist and the play specialist. We were so well supported by everyone.

No parent ever expects to be in this situation and when we were faced with impossible decisions, Rainbows was always there, we never felt alone. We knew Rainbows would do, and did do, everything to ensure we had every bit of care, advice and support we needed.

Towards the end, we had to decide where we wanted Erinne to spend her final days and we knew we wanted this to be at home. The highly skilled nurses at Rainbows helped us to make this happen. When she passed away the use of a specialised ‘cool blanket’ meant our wider family could visit, give her a kiss and cuddle and say their goodbyes.

The Hospice at Home team were so dignified and professional. They interacted with Erinne in the same way even after she passed away. It was a really beautiful way of honouring Erinne and our family, and we hugely respect that.

We can honestly say the strong and incredible team are the fabric of Rainbows. They were a shoulder to lean on, a hand to hold and guide us through such a difficult time. They deal with things that are extremely heart-breaking, but you would never know it. Everyone wears a smile and I have never known a place have such a positive atmosphere and culture, it is incredible. They truly are wonderful people.

We simply couldn’t have managed our journey without Rainbows, and a year later, they are still there for us. My parents even go to the Grandparents Group, which is such a tremendous support to them and is so special. They really are support for the whole family and we simply can’t imagine how things would have been without Rainbows.

From the minute we got her devastating diagnosis, we knew that Erinne was inevitably going to die, and our priority was to give her the best quality of life and cram a whole lifetime of stuff into what we had left with her. We could give her those amazing moments and memories knowing Rainbows was supporting us.

Even from a young age, Erinne had the most kind and generous heart. Having experienced Rainbows firsthand, she always wanted to support them in any way she could. She loved advocating for them and dreamed of raising money so other children and families could feel the same love, care and support she did. She would proudly tell everyone how amazing Rainbows was and how wonderful the people were. We know that even now, Erinne would be so proud to continue to support Rainbows. She would want her legacy to keep championing the place and the people who meant so much to her.

What’s important to us is that Erinne is talked about and remembered, but we know that anyone who ever met her will never forget her. She always had a smile on her face, even when things weren’t particularly positive. She was so kind and she lived life to the absolute full. She was amazing and Rainbows help us to celebrate her in every way.

Jenn and Chris, Erinne’s mummy and daddy

Donate