For Alex, aged 8, Christmas means cheeky elves causing mischief (six and counting!), Lego villages scattered across the living room, and the excitement of choosing vegetables for Christmas dinner with Nanny. It means Minecraft marathons with his big brother Roman (aged 12), laughter, and the warmth of family traditions.
But behind the twinkle of the Christmas tree lights, life for Alex isn’t simple.
When Emily was 12 weeks pregnant with her son Alex, doctors noticed something unusual on the scan. After further tests, they diagnosed him with cystic hygroma – a rare condition where fluid-filled cysts form due to issues with the lymphatic system. For Alex, the cysts affected his airways, meaning that when he was born, doctors needed to perform a complex “exit procedure” to establish his breathing before he was fully delivered. At just three days old, Alex underwent surgery to have a tracheostomy – a small opening in his neck to help him breathe.
“Alex has never known any different,” says Emily. “And I’ve not really known any different with him; it’s just our normal.”
Alex’s treatment journey has included care at Great Ormond Street Hospital, where he’s received specialist support for his condition. The team there continues to monitor his progress closely, helping the family navigate the complexities of his condition with compassion and expertise.
His daily care is complex and constant. Alex requires close monitoring to ensure his tracheostomy tube stays secure, and he often needs suctioning to keep his airways clear. Each evening, Emily changes the ties and dressings around his tracheostomy and administers medication through his gastrostomy tube. Feeding has been a journey of its own; Alex was fully tube-fed after leaving hospital and now eats puréed food, having never learned to chew. Emily explains. “He’s made great progress, and his love for hot chocolate with cream remains a firm favourite.”
Speech was another hurdle. Early on, Alex relied heavily on sign language to communicate. Over time, his speech has flourished, despite challenges caused by an enlarged tongue that once protruded constantly and bled due to friction with his teeth. A planned tongue reduction was delayed during COVID, but the family continues to explore options to support his development.
School life has been a positive experience. Alex attends mainstream school with a trained teaching assistant by his side at all times. “She’s lovely,” Emily says. And when she’s unavailable, other staff members step in to ensure Alex’s needs are met. He’s grown up alongside his classmates, many of whom have known him since nursery, creating a strong sense of inclusion and familiarity.
Support from Jessie May
It’s through these daily medical routines and ongoing challenges that Jessie May has become a lifeline. The nurses provide regular home visits, providing specialist care and emotional support that allows the whole family to breathe a little easier.
“It’s lovely that they can do all the medical stuff,” Emily shares. “So I can just leave and not worry. It also means I can spend some time with Roman, just us, which we rarely get to do otherwise.”
For Roman, his big brother, it sometimes feels like everything has to revolve around Alex’s care, so he gets excited when the Jessie May nurses come to visit. This means he gets to spend some quality time with mum whilst the nurses spend some time with Alex. He says, “I get to spend some special time with mum which I don’t get very often. We usually go out and eat loads like pizza or burgers!”
Jessie May’s support goes far beyond clinical care. “We’re used to meeting children’s medical needs,” says nurse Steve, “but that might happen in the middle of painting sessions or while out looking at Christmas lights. Sometimes we pause to give a gastronomy feed – it’s all part of the day. It just feels natural.”
Alex loves their visits. “I like it when the nurses come,” he says. “It’s funny when I push them off the sofa! I have also painted a toy house with them and decorated the Christmas tree.”
Nurse Lois cherishes every moment with Alex. “He’s so full of joy, and every nurse who visits always leaves with a little piece of that joy,” she says.
Despite the medical challenges he faces, Alex is known for his personality and sense of humour. “He’s very cheeky,” Emily laughs. “In hospital, he worked out that if he raised his foot, the SATs monitor would go off and loads of people would come into the room – and there’s just him sat there with a big grin on his face.”
When Alex is unwell, his family rallies around him. “When he’s been really ill in hospital, I did a video call with his brother Roman, and it was the first time Alex had smiled in days,” Emily recalls.
That bond between Alex and his older brother Roman is at the heart of their family life. The pair play Minecraft and Lego together, sometimes argue, and more often than not, end up laughing. “They’re very close,” Emily says. “I always hope Alex can be independent, go out and enjoy life, and I hope both the boys continue the relationship they have.”
Roman agrees: “We argue 99% of the time… but I also like cuddling him.”
A Jessie May Christmas
As Christmas approaches, the Jessie May team helps families like Alex’s make special memories.
For Emily, she can never fully switch off. Even at Christmas, she must be ready at a moment’s notice to deal with emergencies. That’s where Jessie May steps in.
Your support means Jessie May nurses can visit – giving Mum peace of mind, Roman precious time with her, and Alex the chance to simply be a child.
“Jessie May tries to give that bit of festive joy around the Christmas period,” says nurse Steve. “That could be doing Christmas crafts, walking around to see the lights, or coming to our big Christmas party that brings the whole family together – something they may not have been able to do without the support of Jessie May.”
At home, the Grabowski family have their own traditions too. “Every year we make mince pies and Christmas pudding,” says Emily. “This year we’re having Christmas dinner here – it’s the first in this house.”
“I’m in charge of vegetables and plates,” Alex proudly adds. “I’ve chosen carrots and cauliflower!”
When asked what Alex would wish for this Christmas, Roman grins: “Doctor Who stuff!”
Roman’s own wish is simple: “I wish it snows.”
And Alex’s? “I want to eat!”
With the support of Jessie May, and plenty of laughter and love at home, Alex’s family continues to find moments of joy – reminding us how meaningful care, togetherness, and a touch of festive spirit can be.
