Ellis stood outside with his family, sister Freya and parents

Ellis’ Story

Four-year-old Ellis lives in Rayleigh with his mum Heather, Dad Michael and older sister, Freya. From the outside, Ellis seems like a typical four-year-old. He’s a very confident little boy with no fear and a love of life, but he actually has a serious life-limiting heart condition.

At their twenty-week scan, the family discovered Ellis had a congenital heart defect, Tricuspid Atresia, which is a single ventricle condition meaning he only has one working valve, and this condition will shorten his life expectancy. Ellis has undergone two open heart surgeries and multiple hospital admissions at four years old.

Mum, Heather, said, “As Ellis doesn’t need acute care most of the time, we didn’t expect we would qualify for hospice support. Because of his heart condition, he needs a pool with warmer water, so we initially contacted Little Havens to use their specialist hydrotherapy pool. When we were referred, we were surprised but relieved to be accepted. At the moment, Ellis doesn’t need emergency care or symptom control, but the support we’ve already had from the hospice has been amazing.”

Whilst Ellis is relatively well, the family use the hospice as somewhere they can come together and enjoy quality time as a family, ensuring Ellis and his sister Freya do not see the hospice as a sad or scary place.

Michael continued, “Ellis has a great relationship with the Care Team and loves spending time here. He’s at ease as soon as we walk in. He just wants to run off and play with the dinosaurs. It’s reassuring that he doesn’t see the hospice how adults might; he thinks of it as somewhere to come and have fun.”

Havens Hospices’ motto is ‘Making every day count’, helping families make precious memories that will last a lifetime.

Heather explained, “You come to realise when your child has a severe health condition that it’s the normal days that are so important. Just being given quality time with them is what matters. And being in a home-from-home environment here at Little Havens has enabled us to do that – to be at ease and make those memories.”

Michael said, “Every time we come here, it’s a great memory for us because Ellis always comes away happy with a beaming smile. There isn’t just one moment that stands out, I think it’s every Tuesday when we come for the toddler group.”

At the moment, Ellis is coping well however, the family knows there may be challenges in the future as Ellis’ needs change and his condition progresses.

Michael said, “There would be added worries and anxiety about what would happen in the worst-case scenario if we didn’t have Little Havens. We want him to be in a place where he is happy and comfortable and that he loves. So, if the inevitable did happen, we would come here to Little Havens. We wouldn’t want him to be anywhere else.”

“When we go out to other places, you never fully switch off and relax. Coming to Little Havens is the only place we don’t have to worry about. We know that if something did happen and he needed urgent medical care, the Care Team are here.”

All the care provided at Little Havens is free of charge, thanks to the ongoing support of our local community. Ellis’ family have participated in fundraising to support the hospice.

Heather said, “We have first-hand experience of what your donations can provide; every penny really does make a difference. Thank you for making every effort to support Little Havens.”

“The money you give is truly being used for the greater good and really helps families like us.” added Michael.

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 2023

“We want him to be in a place where he is happy and comfortable and that he loves. So, if the inevitable did happen, we would come here to Little Havens. We wouldn’t want him to be anywhere else.” 

Dad, Michael