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The Goal of Reaching 100 Days When Your Child Has a Rare Disease

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themighty.com

One hundred days. That was our first major major goal post transplant. We had to make it 100 days to finally be able to go farther from the hospital and to start to reclaim a normal life.

One hundred days was our first goal. But as any parent of a kid with a rare disease knows the path you take rarely is “typical.” Our son got an unrelated cord blood transplant at 18 months as a treatment option for his rare lysosomal storage disease MPS 1 or Hurler syndrome.

We spent over 50 nights in the hospital initially which is more than we anticipated. Getting out of the hospital was our first major hurdle, and it felt like such an accomplishment when we were able to walk out of our hospital room and head to the local apartment.

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