Ella Long, a mother from Formby, is urgently fundraising for The Pines at Redgate Primary, a special educational needs (SEN) unit that she credits with keeping her six-year-old son, Kylian, alive. Kylian has level-four cerebral palsy, is non-verbal, suffers seizures most days, and has autism, ADHD, and epilepsy. Despite his severe disabilities, Ella describes him as a determined, giggly, and happy boy.
Kylian's Condition and Diagnosis
Kylian was born by C-section, but at three weeks old failed a hearing test. Doctors discovered he had congenital cytomegalovirus (CMV), a common virus passed from mother to baby during pregnancy. The infection worsened, and by age one, it had affected his brain, hearing, and eyes. Now six, Kylian requires round-the-clock care. Ella told the ECHO: "If he wants something, he will make sure he gets it. Kylian is the life and soul of our family, he's stubborn and does what he wants to do. But once you meet him, you will never forget him. He's always giggling."
The Pines: A Lifeline for the Family
In 2024, Kylian started at The Pines, a SEN unit at Redgate Primary in Formby, for children with significant developmental delay and complex needs. The school quickly became a lifeline for the family. However, because The Pines is classed as a mainstream school, it does not receive the same funding as dedicated SEN schools. This means Kylian and his classmates often lack access to essential therapies, such as speech and language therapy, occupational therapy, physiotherapy, and educational psychology.
Ella explained: "My son is severely disabled. In his class, seven of the children are non-verbal and five have really complex medical needs. Despite the demand, The Pines took Kylian in without hesitation, even though other schools in the area, who get more funding and have all the facilities they need, said no."
Funding Gaps and Impact on Children
The lack of funding means staff cannot provide on-site specialist support, and children must travel to other centres for appointments. The school also lacks an accessible bus, forcing parents to take their children out of school for these appointments. Ella said: "It's a massive struggle, especially for staff, and it means our children are missing out on vital things at school."
Ella has launched a campaign called Dragonflies Brighter Future to raise funds for specialist resources, therapy trips, and equipment for children with complex disabilities in Sefton. She said: "We're really lucky to have this school, as parents we really rely on it. I couldn't cope without them. If we had the funds, it would solve a lot of problems. School is the only place the children and the families get the respite we need."
Staff Dedication and Urgent Need
Ella praised the school staff, saying: "They go above and beyond for us. They're dealing with kids on end of life, kids in and out of hospital. There's been times they've called me to say Kylian is unresponsive and an ambulance is on the way. They have kept him alive. It's scary, it's horrific. I don't know what I'd do without the staff."
Donations can be made via Ella's Just Giving page to support Dragonflies Brighter Future in providing vital resources for The Pines and other children with complex disabilities in the area.
