Leicester-born Reece, who receives care at our hospice, has Robinow Syndrome, an extremely rare genetic disorder which affects the development of many parts of the body.
His tracheal rings are absent, which means he has had to have a specialised tracheostomy inserted to help keep his oesophagus open. He also has profound bilateral hearing loss, which means he is dependent on hearing aids and a specialised amplifier. And he is reliant on a ventilator in order to breathe.
His foster mum, Yvonne explains: “Reece’s development is affected in many ways. His condition makes breathing independently difficult. And now we have major concerns about his heart.”
What it means to Reece is a range of physical challenges. He struggles to walk and he can’t talk, but he is a prolific exponent of Makaton sign language to communicate.
Reece is a happy boy all year round but mention the word Christmas to him at your own risk. His face will light up and he is likely to begin humming a rendition of jingle bells, as only he knows how. And the sense of wild excitement is unlikely to subside anytime soon. Reece, you might say, was born for Christmas and everything good that goes with it.
And yet every Christmas he has known is seen as a blessing; a bonus. Reece was born with a condition which brings a complex range of life-limiting challenges and his future remains uncertain.
Reece is a happy, smiling child, full of love, says Yvonne. “Everyone falls in love with him,” she adds. “He is a very empathetic and loving child. Despite his own difficulties, he always tries to look after everyone else. He is incredibly giving. And he is so bubbly and energetic. It’s infectious.”
And yet it doesn’t seem to slow Reece down, who remains full of energy. Particularly when he visits our hospice.
“Reece has been coming to Rainbows since he was three and he loves it,” says Yvonne. “As soon as you turn the corner into Lark Rise, he knows where he is and gets so excited.”
What she values most at our hospice is an opportunity for respite, when our Care Team look after Reece and she can go home to relax, switch off for a few days and recharge her own batteries. And for those families who choose to stay with us, it enables them to enjoy the therapies and play activities together.
“That’s priceless,” she adds.
In addition, there is always a member of our Family Support Team on hand whenever she might need advice, or moral support.
As for Reece’s favourite time of the year: “We make sure every Christmas will be amazing,” said Yvonne. “Christmas for him is a special time. And he is so appreciative. He’d be happy to celebrate Christmas every day of the year and enjoys every moment. Which means it is always special for me too. And whatever I give, to be honest, Reece gives more in return. He is an amazing fellow.”
Reece has been coming to Rainbows since he was three and he loves it,” says Yvonne. “As soon as you turn the corner into Lark Rise, he knows where he is and gets so excited.