March’s Warrior – Xavier

Xavier’s diagnoses began when he was just a toddler and suffered repeated dislocations of his elbow. He was diagnosed with Ehlers Danlos Syndrome (EDS), a genetic disorder of the connective tissues which causes joint instability and fragile skin. He was then diagnosed with ADHD at age 3 when he became increasingly violent and was unable to control his urges.

Xavier is now 9, and along with the EDS and ADHD also lives with Sensory Processing Disorder, anxiety, complex migraines, Postural Orthostatic Tachycardia Syndrome and chronic pain. His pain is caused by his EDS which results in regular joint sublaxations and dislocations. At the moment he has an extremely unstable right shoulder which is causing him a lot of pain, and he is struggling to cope on a daily basis.

Xavier receives regular physiotherapy to help strengthen his joints, but his shoulder is now so bad that he is seeing an orthopaedic surgeon to decide what can be done to help. His other conditions are managed through OT, chiropractic care and at home programmes prescribed by specialists. Xavier is on several different medications to help with the symptoms of his various conditions, and additional medications to address the side effects of his other medications.

Xavier used to be an outgoing boy who enjoyed life, but he has now withdrawn into his own world. The chronic pain associated with the EDS has made his anxiety and migraines worse. He has said that he doesn’t want to live like this anymore and that no one loves him, and he often feels very depressed.

Xavier’s twin brother and his sister both have EDS (as does his mother) so they understand what he is going through and are extremely patient with him. And through all his struggles and suffering, Xavier’s cheeky grin and caring nature continue to shine.

Xavier loves Minecraft, Space and NASA

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