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Muir's 16th Birthday Party

Muir turned sixteen on Monday 14th January. Many Congratulations from all at MMT! Muir is a young man now, all grown up, despite a prognosis for a short life because of Dravet Syndrome.

The Trust's name sake, Muir and his family, had much to celebrate last week and did so with a Mini Zoo Party at Muir's home on Sunday 20th January, attended by all of his teachers, carers, friends and family. Muir rose to the occasion, despite mild seizure activity, and gave his family and friends the best of his attention. With a love of animals, albeit normally the toy kind, he appreciated the Mini Zoo party laid on for him and had the chance to appreciate a rabbit, a duck, a cockerel, a tarantula, a tortoise, a purple bearded dragon and even a snake, amongst others.

Muir's parents said ' There was a day, not so long ago, when we were told Muir was unlikely to live beyond his second decade.'

'He was two years old and I remember the conversation as if it happened yesterday,' said Mum, Ann.

'But the work of the Trust has helped us change that prognosis for Muir and many other children with complex, life threatening epilepsy syndromes. An accurate diagnosis, made possible by genetic testing, led to more effective treatment that has enabled some control of his seizures.'

It is unlikely that Muir will ever be seizure free and the Maxwells are managing a legacy of a life time of seizures that have left Muir profoundly brain damaged but every cloud has a silver lining and they have helped him achieve some quality of life.  Although he attends a school for special needs children, he lives a fulfilled life with some days riding ponies at Riding for the Disabled and skiing for the disabled on the dry ski slopes.

However, turning sixteen is a bitter sweet moment for Muir and his parents as they now have to apply for legal guardianship through the courts in order to care for him as a young adult. Muir is unable to care for himself on any level and requires care 24/7.

'Obtaining legal guardianship is not any easy process' says Ann. ' Like all things in the care  of a special needs child, they are made to be more challenging, not less and it takes a tenacious parent to get through the process with any speed. We might be lucky and have our guardianship for Muir in place by mid February but for most families the process can take years.'

The Trust is currently campaigning for improved long term care for children with special needs and life-long learning disabilities.

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