My son was diagnosed with MND in November 2018. It progressed rapidly. He was hospitalised on 31 August 2019 and had a tracheostomy in mid-September. During his hospital stay we encountered a partial culture of negativity to any potential procedures that would extend his life span, on the basis that quality of life for people with MND was judged to be non-existent. We successfully challenged my son’s right to make this judgement himself.
Tracheostomies and other interventions are not easy choices and not what every person with MND would wish for. But they are choices I believe everyone should have the right to make, although open-minded advice of the implications is needed to make informed choices.
I was fortunate that my working life gave me knowledge of public sector systems and criteria for decision making which was invaluable when navigating processes for resources to meet my son’s needs. However, nothing prepared me for the devastation and heartbreak caused by MND and its life-changing impact.
My son lives with us at home. He has a continuing healthcare budget.
My goal as Trustee is to use my experiences to help others and to gain more insight of MND and current research.