LJ and Catherine
Parents of Rachel, who has leukodystrophy, age 22-months, and siblings Alex, Caitlyn, Joshua, Abigail, Simeon, and Michael
![Rare disease in children: Voices of the Siblings](https://i.ytimg.com/vi/BcJRMs_mh-M/sddefault.jpg)
Rare disease in children: Voices of the Siblings
Three groups of siblings speak poignantly about what it is like to be the brother or sister of a child living with a rare, life-limiting disease. Produced for the DISORDER film festival.
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Rare disease in children: Voices of the Siblings
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Helping Siblings Cope, From the Parents
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I’m like, I don’t need a bucket list right now.
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MD: Parents--Don’t underestimate the importance of your own goals and values
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Don’t hesitate to say, Somebody help us keep it all together.
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We go see someone. It’s not marriage therapy. It’s life therapy
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On the one hand you want them to stay with you, on the other hand you want them to have that peace and rest.
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Our pediatrician has been nudging us: “Are you sure you want to do these things?” Comfort Care.
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The benefit and blessing of going day-to-day
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This has given me a lot of hope for humanity.
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Finding support in God, family, providers and just talking about it.
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We tell them this is going to be a tough road. They get the situation.
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We don’t know the end of the story but her story will live on forever.
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It really does put your faith to the test … and you find out that it works.
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I find my faith in community.
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As a parent, you know instinctively in your gut that something’s not right.
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If you’re paying attention, you’ll see how the others are doing.
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