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"Purpose is a powerful thing" Finding the strength to carry on is not easy. But parents and family members of terminally ill kids know that quitting on our kids is not an option. Jessica Haywood explains how finding purpose has helped her in her family's fight against Sanfilippo Syndrome. |
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The power of the stupid question You're not expected to know everything at the start. Ask the questions, and challenge the assumptions, until you're satisfied. And don't be afraid to keep asking. |
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Holding down the fort Navy lieutenant commander Billy Pacl's wife Noelle holds down the fort whenever he's away at sea. That is HARD work. So when he gets back to shore, he does his best to jump into action and help her out any way he can. |
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Men need support systems too "What I became quickly aware of was that there were so many amazing female advocates out there - whether it be patients or caregivers - all across the rare disease space. But there seemed to be hardly any guys raising awareness and talking about their rare diseases. And from conversations I began having with other men, it became clear to me that too many men are suffering in silence". |
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Worrying about the siblings Texas dad Jeff Wallis has watched his younger daughter Emily blossom despite the challenge of growing up with a sister with Sanfilippo Syndrome. "She is in her 5th year of teaching, and she's just the most wonderful and caring human being. Her mom and I are so proud of her". |
