Eight‑year‑old Seb is a very happy, fun‑loving person who fills his home with laughter and music. If a song starts playing, he’s already singing and dancing. If someone claps, he’s centre‑stage. And if a camera appears, he beams, shouts “cheese,” and launches straight into a talent show. He loves people, loves performing, and loves any moment where happy faces take over the room.
But behind his bright personality, Seb lives with complex medical needs that affect almost every part of his body.
When he was born, Seb was rushed to NICU while Mum recovered from sepsis and a haemorrhage. Those early days were a blur of uncertainty. As he grew, more and more challenges emerged. Tests revealed epilepsy, cerebral visual impairment, enlarged kidneys, cardiac issues, brain scarring, and a significant leg‑length difference. Later, genetic specialists confirmed a rare condition called diploid triploid mosaicism, which affects every organ and aspect of his development.
Seb can walk short distances, but his right foot is fixed at a 90‑degree angle, making every step painful and unstable. He’s had multiple broken bones and now relies on his wheelchair for most of his day. Nights are broken too – he wakes frequently, needing comfort and support. He needs help with washing, dressing, eating, and staying safe. Even swallowing is difficult, and he eats a minced‑and‑moist diet, using his tongue as a bottom lip because he can’t create a seal with his mouth.
Communication is another area where Seb has found his own unique rhythm. He uses Makaton to boost his communication, mainly with Mum and at school, but switches to speech around people who don’t know it. And in true Seb style, he’s found a way to make this work to his advantage. His dad doesn’t know much Makaton, so Seb cheekily uses it with Mum when he doesn’t want Dad to know what he’s saying. It’s one of the many ways he brings humour and personality into every day.
He relies on his parents for almost everything. And his sister Bobbie‑Mai, now 12, often steps in with a maturity far beyond her years; she’s incredibly protective, loving, and always watching out for her little brother. As Mum Steph says, “She worries a lot about her brother… she’s like a second little mum to him.”
Bobbie-Mai lights up when she talks about him – ” Seb always makes me laugh,” she says with a smile.
When Jessie May stepped in…
For years, Steph never left Seb’s side. The idea of trusting someone else felt impossible.
That changed when Jessie May stepped in.
“We now get to do the things that typical families do every day, which we haven’t had the opportunity to do.”
They were referred last year, and slowly, visit by visit, Mum began to see how much the Jessie May nurses understood Seb – his needs, his personality, and the little things that help him feel safe and happy.
“It’s strange to step back,” Steph says. “It’s only been the last few times I’ve actually left the house. I’m with Seb 24 hours a day, and you don’t realise how important that time for yourself is until you get it.”
Nurse Lois quickly became a familiar, trusted face. With her expert care and calm reassurance, Mum and Dad finally had the confidence to rest, even for a moment.
Nurse Lois says, “Seb is such a happy little boy. When I’m with him, my focus is always on helping him feel safe, happy and able to enjoy the things he loves. Our visits are usually full of music and singing, and it’s so lovely to share those moments with him. And giving the family the chance to have the moments that matter to them, like spending time with Bobbie‑Mai.”
Seb feels that love too. In his own words: “When Lois comes to my house, it makes me very happy, and we have a lot of fun.”
Jessie May visits have created space the family didn’t know they were missing.
Space for Mum to run errands she never normally gets the chance to do.
“I know that he’s happy,” Steph says, “so I can get on and do mundane things like the food shop… and I can also get my Christmas shopping done early so that’s a weight off.”
Space for Seb to immerse himself in the things he loves most: music, talent shows, and playtime with someone who really cares for him and enjoys his company.
And space for Bobbie‑Mai to have precious one‑to‑one time with Mum – it is simply the chance to just be a child while Mum gets to simply be her mum. “Recently I took Bobbie for a milkshake, and it was so lovely to have some time with her on our own.”
“These are the moments that matter,” Steph says. “Their visits also give Seb a lovely distraction from the hard bits of everyday life, which gives me the reassurance to step away for a few hours.”
Moments that matter this Christmas
Christmas, for Seb’s family, has always been quiet. They shop early to avoid busy shops and they stay home to keep Seb safe.
We stay away from everyone and everything,” Steph explains. “We just chill out at home and stay clear of any germs as Seb is very vulnerable.”
On Christmas Day they celebrate together, just the four of them, enjoying the calm and comfort of being together.
“Christmas for us with the kids is precious these days”, Dad Wayne said.
Steph adds, “As Seb’s condition is life-limiting, we make every moment count.”
With Jessie May’s nurses supporting Seb throughout the year, Christmas can be calmer, safer, and filled with the moments that really matter to them as a family.
Your support helps families like Seb’s hold onto the moments that matter, giving them the freedom to enjoy Christmas their own way.
Sponsor a Jessie May nurse this Christmas.
