Noah playing with dinosaurs

Noah’s Story

Noah was born a healthy twin with his sister Ella in December 2015. Dad, Nick, described him as “a strong-willed little boy, who had a love of life.”

Noah and Ella sat in high chairs next to each other eating

At 18 months, Noah’s balance affected his ability to walk. By age three, he’d developed a squint and his speech was delayed, but still found ways to communicate with his family.

On 7th February 2019, after being referred to a neurologist, a large brain stem tumour was discovered – cancerous, aggressive, inoperable and terminal. The tumour was a ‘Diffused Intrinsic Pontine Glioma’, otherwise known as DIPG. The average survival time is nine months from diagnosis and only 10% of children survive for two years.

Following Noah’s diagnosis, one of the nurses from Little Havens visited the family at home. She explained how the hospice could support Noah, his twin sister Ella and their parents through the most difficult time in their lives.

Noah’s Mum, Kat, says, “Having a friendly face explain that hospices are not all about the end of life was enlightening. Little Havens strives to make every day count for children with lifelong illnesses, offering their families a special place to be together.”

“We booked our first respite stay, which meant that we could make full use of all the facilities the hospice had to offer. Noah was allocated a nurse 24 hours a day and we also had a member of the Care Team available to play with the children whilst we had a break. Noah was really well in himself, and it was really difficult to believe the prognosis that we were facing. When we came to Little Havens it was wonderful, and to be reminded of why we were here was almost difficult to believe.

“We made incredible memories at Little Havens. Ella adored the ball pit and Noah loved the unlimited supply of dinosaurs, trains and animals. We enjoyed the hydrotherapy pool, beautiful gardens, sensory room, music sessions and craft area.

Noah, with mum dad and sister in ball pit

“Throughout Noah’s illness, we stayed at Little Havens many times. When he became poorly, we visited for symptom management stays.

“This meant that when Noah’s pain or symptoms became difficult for us to manage at home, the hospice team provided a calm and reassuring environment. Noah’s medical care was their responsibility, and we could enjoy time together as a family with the pressure off.

“There were times when we just said, “Can we go to Little Havens?”. It was just too unmanageable. His pain and symptoms were up and down all the time, so we came here, and we just handed all of that over which was such a relief. It was amazing despite COVID, despite lockdown that they were still available to us for that.”

Nick, Dad, added, “A lot of the doors shut, and this was one of the few doors that always stayed open”

Noah has extensive treatment to shrink the tumour – a biopsy, radiotherapy and daily general anaesthetic to keep him still throughout the sessions.

Six months after his first radiotherapy, the tumour began growing again.  Noah died on 3rd May 2020, aged 4, surrounded by his family.

Nick, continued, “What makes it sad coming back, and emotional as you drive down the driveway, is remembering how much fun Noah and Ella had together at Little Havens, all those happy memories come flooding back. If people didn’t donate before, then we wouldn’t have had all those precious memories, and you can’t put a price on that?

Noah in sunglasses taking selfie with dad

Kat said, “Coming to Little Havens feels like a second home. You just feel at ease, you feel supported. You’ve got everything you need, the only reason you don’t want to be here is that your child is ill. It’s hard to put into words, but thank you to everyone that supports Little Havens because it makes such a difference to us and our little boy”

Noah’s legacy lives on through ‘Noah’s Rainbow,’ fundraising to support Abbie’s Army (an organisation supporting specific research into DIPG) and Little Havens which supported the family throughout Noah’s illness and continues to do so.

Kat explained, “Every pound we get, we split halfway. Halfway between Little Havens and halfway between Abbie’s Army. And we really hope by doing that we’re affecting, with Noah’s legacy, other families through Little Havens and hopefully for research.

To find out more about how you or someone you know would benefit from the care at Little Havens, click here.

If you would like to donate to Little Havens please click here.

Published in 2022

Coming to Little Havens feels like a second home. You just feel at ease, you feel supported. You’ve got everything you need, the only reason you don’t want to be here is that your child is ill.

Kat, Noah's Mum