Some children with mitochondrial disease will attend mainstream school, while others (or their parents) will find the environment of a special school more appealing. In either case, the class teacher and head teacher should be made aware of any physical problems (epilepsy, postural abnormalities, feeding or mobility problems) or learning difficulties the child has acquired as a result of mitochondrial disease. This used to be done with a Statement of Special Educational needs (SEN). However statements are being replaced by Education, Health and Social Care Plans (EHCP) and almost all children diagnosed with mitochondrial disease will have their educational needs assessed in this way. Children with a statement are undergoing a transition and it is anticipated that all children will have moved on to EHCPs by April 2018.

Parents have input into the process of EHCPs and we may be asked to provide additional information on the patient’s medical condition and its implications for education. More information on the EHCP process. In England and Wales it is now unlawful for any school to discriminate against disabled pupils. Parents have means of redress via the Special Educational Needs and Disability Tribunals and through admissions and exclusions panels. For more information view the Disability Rights Commission website where there is a section on education.

Children with mitochondrial disease should have easy access to fluids and avoid excessive exercise. However, it is physically and socially important that children participate in school life and encouragement should be given for the child to do as much as they can without over-exerting themselves. Your specialist will be able to give you more details on what you might expect your child to be able to do and with your permission should be able to provide the school with a medical report outlining the child’s abilities.