Parent Advocates: What’s Your Rare Secret?

June 13, 2017

The Mighty recently released a powerful video talking about what rare parents want to say, but often keep secret. The inspiring video showed messages like, “I am completely and utterly blessed by my child,” and “We’re happy. Our children bring us pride and joy.”

Keeping with the theme of this great clip, this week, we asked the rare community a question: In one sentence, tell us, as a rare disease parent advocate, what is a secret you want to share?

Here were their responses!

Mindy L.: Just because you’re told your child has a rare genetic disorder – doesn’t mean your child will have the worst possible outcome. My son is doing so well with T9M and his doctors are amazed. He is one in a million

Melissa B.: My mom always said, “be prepared for the unexpected, be flexible, and lean on your support network. Life is short. Be thankful and live every day to the fullest.

Tonya H.: Our secret to this rare disease fight is complete and utter strength– In faith, healing, hope, family, perseverance, advocacy, and above all– in purpose! 

Robin J.: My secret to being a special needs parent is that no matter how similar or different you are, it’s still a ride of a lifetime. I’m mom to an amazing 1p36 Deletion Syndrome daughter!

Sharon V.: Trust your gut. Doctors may be highly educated, however you are the expert on your child and how their condition affects them.

Sam Z.: We make life complicated by rare work and we make it look easy, but don’t you dare tell us that our life isn’t hard.

Beth V.:  I am stronger than I ever thought I could be, thanks to my beautiful rare daughter.

Morgan T.: I am more exhausted than I ever thought possible…but he’s worth it.

Jackie B.: I am my child’s voice. Be persistent, be vigilant and above all don’t give up!


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