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Noah’s story: “Making every day count when time is short”

“We made incredible memories at Little Havens.”

When Noah was diagnosed with a large brain stem tumour, the family knew that time would be short. 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.

Noah’s Mum Kat says:

“After our initial shock at Noah’s diagnosis, we were put in touch with Little Havens Hospice.

“One of the nurses visited us at home and shared how the hospice could support us, even whilst Noah was doing well. Having a friendly face explain that hospices are not all about the end of life was enlightening. Little Havens makes every day count for children with lifelong illnesses, offering their families a special place to be together.”

Noah’s family soon discovered that every aspect of hospice care was centred on the child, and their family. It was all #ForTheChildren. And their precious boy, Noah.

“We made incredible memories at Little Havens. Ella, Noah’s sister, 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. He preferred a large bed to spread out his dinosaurs, so the staff adapted the room to suit his needs. Nothing was too much trouble.”

Noah's mum

Memory making was so important to Noah’s family, who knew that time would be very short.

Throughout Noah’s illness, the family stayed at Little Havens many times. When Noah became more poorly, they visited for symptom management stays: “This meant that when Noah’s pain or symptoms became difficult for us to manage at home, the hospice 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.”

Noah died on 3rd May 2020, aged 4, surrounded by his family.

“Now that we are a bereaved family, Little Havens still continues to offer support. Ella, Noah’s sister,  can have sessions with an experienced counsellor, and we can visit for annual memorial events. 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.”

Children’s hospices like Little Havens provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.

Family stories