Discovering that a relative has been diagnosed with a rare disease can be a bit overwhelming and leave you feeling somewhat worried and unsure of how to help out. Duncan knows all too well what it feels like to hear first-hand the life-changing news of a close relative. He shares his story below.
Diagnosis and reaching out
When Duncan's niece Lilia was diagnosed in June 2021 aged five with MPS III Sanfilippo, it took her family and friends a long time to get their heads around her newly diagnosed disease. However, Duncan's niece and family were not on their own and reached out to the MPS Society for guidance and support.
Duncan says, "The MPS Society has provided a massive amount of support to my brother, Jonathan’s family, providing workshops, counselling and sibling support. They have even given presentations at Lilia’s school to raise awareness."
Not one for sitting around, Duncan has set himself a very big challenge to run one marathon a month throughout 2022. He is hoping that by going the extra mile, or 26, he can help to raise awareness and funds through sponsorship for the MPS Society.
So far, Duncan has completed his first marathon at Caldecotte Lake in Milton Keynes, wearing a bowler hat which a lot of smiles on the way round and even did a good job of keeping the rain off!
If you would like to support Duncan and donate, please click on the link here to his Just Giving page.
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