Mother of Rachel. Rachel has Canavan disease and at the time of this interview was 16 and Jessica was 17. They are now 19 and 20 respectively.
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
Follow up with Sherri: Rachel is now thriving in a long-term care pediatric residence.
Being their mom is a joyful thing.
If the child is asking the question, it’s because they need to know.
She told me how important it is to know the sad stuff too.
She wanted to have a normal typical world.
We postponed Make-a-Wish until Jessica was old enough to remember it.
Jessica has asked, “Will I have to take care of Rachel?”
We talk about what things would be like if Rachel were typical.
What would Rachel say to Jessica if she could speak?
God gives me the strength to keep carrying on.
You may not appreciate it now, but when the whole thing happens, there is a plan.
It has taken the specialists 11 years to get through to me.
Jessica, on being Rachel's big sister. Rachel has Canavan Disease.
It’s tough to talk about end-of-life preparedness, but it’s part of what we have to go through