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The Loneliness I Feel as the Parent of a Child With a Rare Disease

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themighty.com

Having a child with a rare disease like Hurler’s syndrome, we are extremely lucky as we have a huge network of support. We have had a ton of family, friends and even strangers surround us with prayers, support and positive energy when we face various complications and issues with our son.

Additionally, I am part of the MPS community both in real life and on social media which provides me with a network of people who “get it” and understand the ins and outs of this journey on a deeper level because they live it too.

I also have a large family and friends both in the MPS world and not in that world who I can reach out to when I need it. I am so grateful for the number of people I have supporting my son, myself and my family.

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