Here for you: supporting individuals and families through our Advocacy Service

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Meet Joanne, Pedro and Luca Fernandes. Luca is four years old and was diagnosed with Duchenne muscular dystrophy in November of last year.

Luca is due to start school in September of this year, and his parents had put in an application to their local authority for a place at Lilliput CE VC Infant School. The decision to apply to this school was based on medical grounds.

Luca is currently still able to walk. However he has already demonstrated difficulty climbing stairs as well as with his motor skills and balance, making him prone to falls. As his condition deteriorates, his motor skills will further decline and he will find it even more difficult to not only climb stairs and navigate sloped surfaces, but also to walk without assistance or the use of a wheelchair. Both his family and team of health professionals had agreed that Lilliput would best suit Luca's needs.

Unfortunately, Luca's application was turned down by the local authority, on the basis that the school was oversubscribed and he was awarded a place in an equally oversubscribed school in Luca's catchment area. Although this school was wheelchair accessible, the physical layout - steps, slopes, and concrete walkways - would not have been accessible to Luca. On the contrary, attending this school would have created a greater risk of trips and falls for Luca, possibly resulting in serious injury and significant impact on his health and quality of life. Luca had also recently been started on steroids, which would mean that any fall Luca had would put him at high risk of breaking a bone or suffering a vertebral facture and result in a long period of immobility which could significantly impact his ability to recover function of his muscles and the affected limb - particularly his legs. What is more, overexertion in order to overcome the sloped surfaces at the school allocated to him would hinder his ability to learn in the classroom and to access and engage in a fulfilling education.

Our advocacy team helped the family to appeal this decision, advising them on the collection of evidence, putting them in touch with the relevant health specialists, such as their local neuromuscular care advisor, and providing supporting documentation.

We are delighted to be able to announce that Luca's appeal was successfully upheld and he will now be attending his first choice of school, Lilliput, in the autumn.

Our advocacy team is here to help anyone affected by a muscle-wasting condition who is experiencing difficulties accessing the services, benefits or equipment they are entitled to. Last month our team managed to secure nearly £300,000 worth of care and support services for our families.

The advocacy service is free of charge so if you are struggling to get the care and support you are entitled to, please contact us on 020 7803 4800. Alternatively, you can send us an email at

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