Our lad Luca had played a football match on Sunday and cycled to school as usual on the Monday back in February 2018 when he took ill that morning and was sent to hospital. He was unable to walk and his body went into spasm. A very poorly Luca was transferred to Sheffield Children’s Hospital and endured a few weeks of gruelling tests and intensive physiotherapy. Luca was diagnosed with Functional Neurological Disorder (FND). FND is a common and disabling cause of neurological symptoms. People with FND can experience a wide variety of symptoms including:

• weakness and abnormal patterns of movement (e.g. tremor, abnormal posturing of limbs)

• attacks of abnormal movement/change in awareness that resemble epileptic seizures

• sensory problems

• cognitive problems

• visual and speech symptoms

Whilst the symptoms may appear similar to neurological diseases including those of Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as disabling, they are not caused by structural disease of the nervous system, but instead are a problem with the “functioning” of the nervous system. Basically the messages from his brain are unable to be communicated properly to the rest of his body and so this has now become a ‘normal’ state for Luca. However, there is a chance that the brain can be retrained to enable him to get back to how he was before this terrible disorder hit.

Luca is such a brave young man and has coped with this totally disabling condition incredibly well. There have been such tough times for his family as it seems to be one step forward and two steps back . Luca can make a bit of progress one day and can maybe take a few steps independently to the devastation of another seizure the following day taking Luca’s progress right back to square one, which is beyond frustrating when he is trying so hard.

Currently Luca is doing his best to keep up with a very reduced timetable at school and has physiotherapists come to the house once a week. Whilst Luca’s parents are so thankful for the support they have received from the NHS – this 30 minute session of physiotherapy is simply not enough to help our Luca grow strong again. His muscles get weaker each day as he is unable to use them normally. He misses football, riding his bike and is determined to get back to school without having to rely on somebody pushing him around in his wheelchair.

As part of Luca’s mum’s constant and desperate search for answers and solutions we have come across a Special Neurological, Physiotherapy and Complex Rehabilitation Centre in Chester called Therapy Matters. They have experience of dealing with FND and have been responsible for some real success stories. Luca has an initial consultation in mid November and we hope that intensive, block sessions of physiotherapy will help him back on his way to a more normal life. This will be a long, hard road but the family feel that we have to do something more for our boy – anything is worth a try. We are fundraising to help towards the costs of the treatment and for the family to be able to stay in Chester with Luca whilst he has his blocks of treatment. This will involve a lot of travel, hotel stays and a huge challenge ahead for Luca but if it helps him even a little bit, we think it has to be worth a shot. If you can spare anything at all to help to us get Luca to Therapy Matters in Chester we would be forever grateful. Thank you for reading Luca’s story.