Rosie reached all her milestones as a baby until she was two when she started to become very tired and went off her food, something she had always loved. After six months of investigations, she was diagnosed with Restrictive Cardiomyopathy. By the time the family received the diagnosis, Rosie was in end-stage heart failure. 

In 2016 Rosie received a heart transplant but after a year of waiting for a heart, she had multiple strokes and complications which meant she had become severely disabled.  

Now aged nine, Rosie and her family have been supported by Little Havens since 2016. At the hospice, Rosie and her siblings can play together, which is one of the only places this is possible, because of our specialist wheelchair-accessible equipment. 

Mum, Sara, said “Coming to Little Havens for the first time, we could tell Rosie just loved it. The staff were incredible, everyone was so friendly and smiley it instantly put Rosie at ease. I remember leaving after that visit thinking it’s such a magical place. 

“It can be quite tough as a single mum with three children, but when we are at the hospice the Care Team are always on hand to care for Rosie.” 

“The biggest thing the children love about Little Havens is they can be completely themselves; it gives them the space and freedom to play together and be happy. There are things here the children can access which they can’t anywhere else. 

“The specialist two-seat bike is incredible – it’s by far Rosie’s favourite thing, she sits on the front and her brother or sister on the back. They cycle to the top of the hill and then speed down, the faster they go the more Rosie loves it. Rosie wouldn’t be able to use a standard bike so having equipment like this at the hospice allows her to have experiences with her siblings which wouldn’t be possible anywhere else. Likewise, with the wheelchair swing and roundabout, they can play together as siblings, and have an amazing time.” 

Part of Rosie’s condition means she has a Mic-Key button which is a tube that allows her to receive all her nutrition and medication directly into her stomach.  

Sara continued, “The Care Team at Little Havens are specially trained to care for children like Rosie with such complex needs, which is really reassuring. Having someone else who can administer her milk, water or medication is a blessing.” 

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

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Published in 2022