LJ and Catherine
Parents of Rachel, who has leukodystrophy, age 22-months, and siblings Alex, Caitlyn, Joshua, Abigail, Simeon, and Michael
Helping Siblings Cope, From the Parents
One of the top concerns for parents of children living with a serious illness is the well-being of their other children. Listen to these courageous parents talk about how they support these kiddos.
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Rare disease in children: Voices of the Siblings
Helping Siblings Cope, From the Parents
I’m like, I don’t need a bucket list right now.
MD: Parents--Don’t underestimate the importance of your own goals and values
Don’t hesitate to say, Somebody help us keep it all together.
We go see someone. It’s not marriage therapy. It’s life therapy
On the one hand you want them to stay with you, on the other hand you want them to have that peace and rest.
Our pediatrician has been nudging us: “Are you sure you want to do these things?” Comfort Care.
The benefit and blessing of going day-to-day
This has given me a lot of hope for humanity.
Finding support in God, family, providers and just talking about it.
We tell them this is going to be a tough road. They get the situation.
We don’t know the end of the story but her story will live on forever.
It really does put your faith to the test … and you find out that it works.
I find my faith in community.
As a parent, you know instinctively in your gut that something’s not right.
If you’re paying attention, you’ll see how the others are doing.