A mother has expressed her frustration after her two-year-old son, who cannot move due to a rare genetic disorder, was denied a Blue Badge by his local council for not being considered 'disabled enough'.
Family's Struggle for Accessibility
Charlotte Jenner, 27, and her partner Charlie Sears have faced immense challenges since their son Ronnie was diagnosed with Phelan-McDermid syndrome (PMS) just before his first birthday. This rare condition affects only about 5,000 people worldwide. One of its main symptoms, present in 97% of cases, is hypotonia, which causes Ronnie's muscles to become tight, stiff, and resistant to movement. As a result, he cannot walk, crawl, roll, or transition from lying to sitting due to impaired communication between his brain and limbs.
Despite needing to be lifted into bulky mobility equipment, Charlotte claims that Kent County Council (KCC) has repeatedly denied Ronnie a Blue Badge. After months of struggling to safely park and extract 18kg Ronnie from the car, the project manager applied for a disabled permit in June last year, but her application was declined shortly afterward. 'It was basically a tick-box exercise, and all of his diagnoses have been shoved in note boxes,' she says.
Although Charlotte lodged an appeal with evidence from Ronnie's GP and physiotherapist, the family was again refused. A KCC Blue Badge team member explained that for a child under three to be eligible, they must be on palliative care or using life-saving equipment such as breathing apparatus or feeding tubes.
After further argument, the authority agreed to an in-person assessment by an occupational therapist. Charlotte brought Ronnie and a folder of medical letters detailing over 100 scheduled appointments. According to Charlotte, the assessor was sympathetic, but the final decision was made by a panel that refused to issue a badge for the third time. 'It basically said, we recognise Ronnie's disabled, but he's not disabled enough. That is the long and short of it. I'm having to fight my local council for basic accessibility for my disabled son,' she said.
Understanding Phelan-McDermid Syndrome
Phelan-McDermid syndrome is caused by a deletion of the terminal segment of chromosome 22. Also known as 22q13 deletion syndrome, individuals with PMS have developmental delay, difficulty communicating, and may have cognitive and mobility issues. They can also have autism spectrum disorder and low muscle tone. Behaviours may include persistent mouthing, aggression, teeth grinding, and decreased pain perception. Diagnosis is through genetic testing, and treatment is symptom-based.
Charlotte argues that Ronnie should be assessed as an individual, not as part of a tick-box exercise. The issue has caused Ronnie to miss essential medical appointments and prevented him from using his walking frame at nursery, hindering his progress. 'Right now my council is preventing me from including him in everyday society, from giving him the same opportunities and from making him feel included,' she said.
The family has contacted their MP, Mike Martin of the Liberal Democrats, who described the situation as 'deeply concerning' and has pressed the council for a review and a fairer Blue Badge system.
KCC guidelines state that under-threes may be eligible if they always need hard-to-carry medical equipment or need to be near a vehicle for urgent treatment. A KCC spokesperson said: 'We understand the council's decision is disappointing. However, KCC must assess Blue Badge eligibility against national Department for Transport guidance. This provides a very clear set of eligibility criteria for children under three which were not met in this case.' The council added that when Ronnie turns three, the eligibility guidance allows for a greater scope in assessing mobility, and they are happy to reassess.
Until then, Charlotte and Charlie will struggle to take Ronnie places. 'When I have to redo this assessment, my answers will not be any different,' Charlotte said. 'Ronnie cannot choose whether he is disabled or not, that choice was made for him.'
