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You have probably not heard of MLD but it is a rare neurodegenerative disease, a bit like Parkinson's disease or Alzheimer's disease, but it mostly (though not always) affects young children. MLD usually onsets between the ages of 1 and 2 and, tragically, affected children normally die by the age of 5. There is a treatment available for MLD but it can only be given before symptoms start. However, as MLD is not part of the UK Newborn Screening Panel most individuals who could benefit from it do not receive it. I am supporting the MLD Support Association UK as they provide support for families when they receive a diagnosis, provide practical help in helping affected families access support from statutory bodies, and advocate for MLD to be added to the Newborn Screening Panel so other families do not have to go through this heartache.

I have decided to do two events this year for this most worthy of causes. Firstly, I will first walk the length of Hadrian's Wall (84 miles) alone, as many parents with a child diagnosed with a rare disease feel alone. Secondly, I will run the Great North Run - anyone who knows me will know that I hate running and this is a race I never thought I'd run, just as parents of children with MLD are living a life they never thought they'd have to live, dedicated to the specialist 24 hour care their child requires.

I have had the great privilege of meeting the amazing folks who run the MLD Support Association, almost all of whom have personal lived experience of caring for a child with MLD. I have also met the inspirational families who battle to try and give their children a normal life in the most abnormal of circumstances. Having met them, I feel compelled to do something to help them. I would suggest that if you, like me, met these children and families you too would feel you had to do something.

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