This week, five‑year‑old twins Louis and Albie began their very first day at school – a milestone their mum, Alex, once wasn’t sure they would reach. She shared beautiful photos of them dressed in their new uniforms. For most families, the first day of school is emotional. For families like theirs, it’s extraordinary.
Louis and Albie live with an extremely rare neurological condition – so rare, in fact, that it isn’t listed on any medical system, and they are currently the only children known to have it. Alex remembers those early months vividly: the boys crying constantly, rarely sleeping, and long nights spent driving them around just to soothe them.
“They wouldn’t really sleep – I was driving them around to try and get them to sleep and this went on and on. And then there was feeding issues, and I thought they may have really bad reflux, but something just didn’t seem right.” Alex explained.
At just five months old, after genetic testing and hospital admissions, the family were told that they had a very rare neurological condition and they would most likely develop epilepsy, but they couldn’t really give any more than that; just that they would need to look at special schools for them.
“It was really scary at the beginning, all you want to know is what is this going to look like?” Alex said.
But with no clear answers, she made a decision: to let the boys grow on their own trajectory, celebrating who they are rather than worrying about what might never be known.
Choosing the right school
Finding the right school was a journey in itself. Alex visited several settings, weighing up what each could offer. She spent hours building the boys’ application, determined to show that one particular school was the only one able to meet their needs.
“I knew that I had to make it so that you couldn’t dispute that this school was the only school that could meet their needs.”
Transport was another hurdle – with another child, Raffy, to get to school, daily long‑distance travel simply wasn’t possible. Thankfully, the family secured support, making the boys’ attendance possible.
Their new class has eight children and eight adults, giving Louis and Albie the high level of support they’ve always needed. After years of one‑to‑one care at nursery, Alex was relieved: “I was really worried they wouldn’t have the same level of support, but they will.”
Personalities that shine
Despite their challenges, Louis and Albie are full of joy.
“Albie’s very chilled; like a chilled‑out sloth. Louis’s like the cheeky monkey; always on the go.”
They make each other laugh, reach out for one another, and regulate each other – a bond that has carried them through every stage of their journey.
Although they are non‑verbal, they communicate in their own ways. “One cries, the other one laughs – sometimes it’s like they’re having their own twin conversation.”
Their beloved music therapist will continue sessions at school as well, which is a huge comfort for the boys – “they respond so beautifully to music.”
How Jessie May fits into their story
Jessie May has been part of the family’s life since the boys were babies. Through specialist nursing visits, events, and accessible days out, our nurses have helped give the family breathing space and moments of joy.
“It’s so nice just to be able to get out for a few hours, and also spend some time with Raffy,” Alex said. With two nurses, often joined by a student, supporting the boys during visits, Alex can focus on Raffy, who is eight. “Siblings often get put aside when you’re trying to meet complex needs,” she shared.
The family has also loved using the Jessie May Days Out Passport, visiting places like Bowood, Puxton Park and We The Curious. “It means we can go to more things – it’s so nice knowing that you can access things and not worry about paying lots of money, only to have to leave early.”
Starting school and what it means
Seeing Louis and Albie in their school uniforms, ready for their first day, is a moment filled with pride. They may not fully understand what school means yet, but Alex is confident they will settle quickly. Their teacher is warm, their environment is supportive, and their personalities, will no doubt, carry them forward.
For children with rare and complex needs, starting school is more than a milestone. It’s a testament to resilience, advocacy, and the power of specialist support. It is a chance to grow in their own way and for people to celebrate them too.
As Alex beautifully put it: “Everywhere they go, people just fall in love with the boys.”
And now, as they begin their school journey, they’ll continue doing just that, together.
