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Family life emotions

Celebrating a Milestone Birthday When Your Child Has a Rare Disease

Family life emotions
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themighty.com
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We have been talking about my son’s upcoming 5th birthday lately. He has been so very excited about planning for it, but for me it has brought some mixed emotions.

When I first looked up MPS and Hurler’s syndrome, the first thing that slapped me in the face was a five to seven year life expectancy.

At the time I couldn’t imagine my son dying before he really lived. That was one of many things that pushed us to try the bone marrow transplant (BMT) treatment: to give him the best chance at as long of a life as possible.

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