Please help us raise money for Charlotte’s needs

My daughter Charlotte is a 15-year-old girl who was diagnosed with autism in July 2023, and FND in August 2024. After becoming dysregulated in school during July 2024 she banged her head, leaving her with severe concussion and a neck sprain, after a trip to A&E. Days later she began bleeding from her ear so after another trip to A&E she was put under general anaesthetic to have a CT and MRI scan - thankfully they came back clear. Shortly after coming around from the general anaesthetic Charlotte experienced her first tonic clonic seizure, it lasted for 18 minutes. We were discharged the following day with a diagnosis of NEAD (non-epileptic attack disorder). Despite this, Charlotte continued to have seizures which increased in intensity, after another admission to hospital she was diagnosed with FND (functional neurological disorder). Functional neurological disorder (FND) describes a problem with how the brain receives and sends information to the rest of the body. Only 50,000 people have FND in the UK and the first patients to be diagnosed with FND were only diagnosed a few years ago, after being told ‘it’s all in your head’. There is no cure for FND, only years of therapy can ease your symptoms.

As I said earlier, Charlotte suffers from tonic clonic seizures and she can have up to 20 on a bad day. These seizures can leave Charlotte very withdrawn and uncoordinated. One of the most recent seizures left Charlotte paralysed from the knees down. As a consequence, she has now been in hospital for over a week with reduced mobility and paralysis. Charlotte is also now tube fed, as a result of Dysphagia, as well as being unable to walk. After a course of intense physio therapy, Charlotte is not much further forward with her mobility and is going to become an ambulatory wheelchair user on the days she is struggling to walk.

In spite of Charlotte’s condition, she is a very determined girl with big dreams. She could be an ambulatory wheelchair user for a long time, as people say, how longs a piece of string. However, due to occupational therapy and wheelchair assessment wait lists, we could be waiting months for the equipment to give Charlotte her independence back. Without Charlotte’s independence, she could be stuck in hospital for weeks/months on end. For an autistic child, being in hospital is the wrong place for them to be and can create more traumatic experiences.

Wheelchairs typically cost £1000, on top of VAT, insurance and tax. That comes to around £1200, so…

Will you please help us?

Much love Karen and Charlotte x

Instagram for Charlotte’s story is ‘audhd.fnd_andme’