Meet Deshawn

Five year old Deshawn was diagnosed with Hypoplastic Left Heart Syndrome - a condition where the left ventricle of the heart does not develop properly so is much smaller than usual. This means that his heart is unable to pump blood around the body effectively. His condition is managed via medication and the focus is on keeping him comfortable.

“We know this Christmas could be Deshawn’s last. That’s why we need your help to make it extra, extra special.”

On Christmas Day, Deshawn will be looking forward to baking and decorating gingerbread. He’ll be singing along to his favourite Christmas songs. And on Boxing Day, he’ll be watching the big match with his Dad. His family want to ensure every second of the festive season is as perfect as it can be, full of his favourite things. Because sadly, every time Christmas comes around, it could be Deshawn’s last.

Mum, Crystal said; "Even before our beautiful, bright and brilliant baby boy was born, we knew we wouldn’t have long together. He was diagnosed with a severe heart condition during our 20-week scan. We had been trying to get pregnant for such a long time and this scan was the date when we had been looking forward to seeing our future baby – a day of celebration.

Instead, we were now being asked to make decisions about our future. We were having to absorb information about treatment plans and options and prognoses and the scary realisation that our baby may not survive his first year, let alone into adulthood. But there was no doubt in our minds, we were going to make every second of everyday count.

On the day Deshawn was born, it was impossible to believe this tiny baby could have a life-limiting condition. As we held our special baby boy in our arms, the doctors told us that he could live until his twenties, or he could die in childhood. Only one thing was certain: this boy was the love of our lives.

Over the past five years, Deshawn has been in and out of hospital and undergone surgery. Unlike most boys his age, he has had to miss a lot of school. He’s so sociable, he loves making friends and being around people. One of his best friends is Natalie, his health care support worker from Haven House.

We were told about Haven House by our medical team at Great Ormond Street Hospital. Like a lot of parents, when we were told this was a hospice, our first instinct was to say no thank you! Deshawn wasn’t dying, and hospices in our minds are a place people go to die. But Haven House is not like that at all. It’s a place for joy and making precious memories.

Natalie comes to our house every week to play with Deshawn and to give us some respite time so we can look after our daughter Aria or run some errands. As soon as Natalie walks through the door, the house is full of giggles and games. Deshawn looks forward to seeing her – he even waits by the window watching out for her to arrive.

Natalie’s fun and friendship has brightened our lives. But that is just one of the many ways Haven House has supported our family. Last year, their team was by our side during one of the most challenging times of Deshawn’s short life as he recovered from major heart surgery."

“One of the amazing ways that Haven House’s work never stops. They are always by the side of families like ours, from the moment of diagnosis to the day when it’s time to say goodbye.”

We know that when Deshawn is no longer with us, the memories of him playing and smiling and laughing with Natalie will never fade.